GUESTBOOK

Go JACK !
Go CHRISTINA !

ARRIVAL: 31.08.2005 - 22:59

Jack, Char, Roy & Christina,

Do you know how much I love you all? I hope you do! I am here through thick and thin. I can't wait for Jack's stem-cell transplant so he can be a healthy little man!!

With all my love forever.
Julie AKA Aunt Bubbles

ARRIVAL: 01.09.2005 - 10:49

I hope people start stepping up to the plate and help you all out. You have been so generous to so many people.

The advantage a lot of people have is they are there or close by, I am 1200 miles away. I wish there was more I could do. You are in my thoughts and prayers as always.

XXOO

D

The page is looking great!

ARRIVAL: 02.09.2005 - 09:19

CHAR,ROY,CHRISTINA & JACK,

YOUR IN OUR THOUGHTS & PRAYERS EVERYDAY. KEEP THE FAITH,THINK POSITIVE THOUGHTS..WE ARE DOING THAT FOR YOU ALL.

ARRIVAL: 05.09.2005 - 23:23

Charlotte, Roy, Christina, and Jack:

You are all a true inspiration ... I am honored and proud to be a part of your lives.

Always in my prayers,
Cheryl

ARRIVAL: 06.09.2005 - 08:23

Well, I finally made it here. Tell Jack and Tina I saw their pics. Will talk to you soon

Diney

ARRIVAL: 08.09.2005 - 14:53

It was so fun sharing you're 3rd birthday with you. Vinnie and James loved the Rainforest Cafe.

Love
Bubbles

ARRIVAL: 08.09.2005 - 14:55

We are very fortunate and happy to have you as friends, neighbors and classmate. Our support and prayers always with Jack and his family. We are here for you always if you need ANYTHING-- and we mean it! ( oh by the way, nice pictures!!)

ARRIVAL: 08.09.2005 - 21:15

You're the man Jack!

ARRIVAL: 08.09.2005 - 21:26

I knew your Mommy when she had big hair!!! I love both you little stinkers!!!!

colie

ARRIVAL: 09.09.2005 - 09:37

Hi Charlotte, Roy, Christina & Jack!

Thanks for the blog & weblinks for Jack.
Dr. Ashmore is wonderful! He's our vet too. We'll be looking for the wrist bands.
I just found out about the Beef Steak fundraiser dinner on October 23rd.
We'll see ya there!

Many Hugs,

Christine, Stan, Sofie, Hosski, Mickey the wonder cat & Fish

ARRIVAL: 09.09.2005 - 12:37

Big "HELLO" to Charlotte, Ray, Christina & Jack from your neighbors, Stan, Christine, Sofie, Hosski(that big dog that looks like a pony), Mickey the Wonder Cat & Fish!
Dr. Ashmore is our vet too! Can't wait for the wrist bands to come in. Very cool!
Sofie will see Christine & her new cast at school. 3rd grade, can ya believe it?!
See you in the library soon, Jack!
Gigundo Hugs all around...
The Lewandowski Family

ARRIVAL: 18.09.2005 - 22:15

Soy de Chiapas, no hablo ingles no se si ustedes hablen español, me imagino que su hijo tiene lo mismo que Andy, al ver la página de Andy encontre la suya yo tengo un hijo Mateo con inmunodeficiencia primaria llamada agammaglobulinemia , espero que se encuentren bien y sobre todo con esperanzas ojala podamos comunicarnos.

ARRIVAL: 20.09.2005 - 18:42

CHARLOTTE,
YOU MADE DR. LEVY'S DAY-SEEING HIS
PICTURE WITH JACK. I THINK HE CALLED
EVERYONE HE KNEW TO GO ON THE WEBSITE.
IT WAS VERY NICE OF YOU TO MENTION ME
TOO. IT WAS ALSO NICE TO SEE WHAT DR.
ORANGE LOOKS LIKE. YOU CAN TELL WHAT
A NICE MAN HE IS JUST BY HIS PICTURE.
SEE YOU SOON.
JEANNE

ARRIVAL: 22.09.2005 - 22:08

I am grateful for this website as it makes me feel that much more connected with Charlotte, my oldest and best friend. Even though we speak often, living 1500 miles away makes it hard to give you a hug, but hopefully you feel the power of our prayers for Jack, Christina, Roy and you. I can't begin to tell you how much I pray the stem cell transplant is a success. That you and all of your family stay well. I am so glad I got to meet Jack when I was there. He is a trooper! Someday, I hope our kids get to play together - just like we did since we were 3 years old. I love you like the sister I never had. You and Jack are in my prayers every night. Thank you Andres for your creating this website. Andy and your entire family are included in our best wishes too!

ARRIVAL: 22.09.2005 - 23:19

Char,Roy, Christina & JACK.... We Love you and pray for you and your family every day. Together we and you can beat anything that is handed to us.......

ARRIVAL: 24.09.2005 - 18:33

Char, Roy, Christina and especially Jack, You are all a true testament of the word family. The Love and support you have shown Jack and eachother through such hard times is truly inspirational. Keep the faith, my thoughts and prayers are with you.
Love Jill

ARRIVAL: 26.09.2005 - 19:29

We get updates about Jack's condition from his grandfather here in Galway - my girls get off their school bus by his driveway. Jack is often in our thoughts and prayers.

ARRIVAL: 27.09.2005 - 14:09

What a wonderful website ! I was introduced to this site By Janet Checo
what a wonderful friend she is to your family. I am saddened by jacks condition But also ,so happy he has so many wonderful friends and professionals helping his cause and others who share his condition. I will make others aware of this site so they too can offer support.
Best Wishes to JACK and Family
Tim Beasley RN Medical City Children's
Dallas Texas

ARRIVAL: 29.09.2005 - 19:21

Hello ! I am proudly wearing your NEMO band... I'll send you a picture soon! The website is awesome. You all are always in my prayers but especially my favorite patient Jack!
Lots of Love

ARRIVAL: 13.10.2005 - 13:21

Hey Jackie Boy!! Our Beefsteak fundraiser is coming closer! So many people have opened their hearts to you. They all must know how special you are. Even though you beat up Ronya all the time!!
I love you always and forever

Aunt Bubbles

ARRIVAL: 26.10.2005 - 17:49

hey Jack, this is gabriella from tiny treasures.i hope they find a cure!and i hope the beef steak dinner
helped!i had fun bye!.......<3

ARRIVAL: 01.11.2005 - 10:32

Jack:

The Beef Steak Dinner was a success ... you were the star of the show!

So many people came out to show their support. We truly just can't thank then enough.

You are a very special, very loved little boy!

Love you,

Cheryl

ARRIVAL: 02.11.2005 - 14:25

Hey Guys,

Glad to hear that the beefsteak was a success. Sorry we could not make it, but hope the donation helped. You are in our thoughts and prayers always, if there is anything else we can do to help, just call!

ARRIVAL: 14.11.2005 - 19:06

Roy, Char, Christina and Jack

Our thoughts and prayer are with you all everyday!!!!

Jack What a handsome guy you are. Stay strong we love you

Christina you are getting so big and you get prettier every time we see pictures.

Roy and Char We love you guys and if you need something let us know.

ARRIVAL: 19.12.2005 - 22:46

Our thougts and prayers, many prayers are with you all at this most blessed time of the year. To you Jack with your upcoming good news and to Charlotte I lost my Dad 3 years ago this Christmas Eve. My heart goes out to all of you, Roy, keep strong for your family. God has a funny way of answering prayers and giving hope when there doesn't seem to be any. We'll be in touch as I know you will be with us. Please let us know if we can do anything! Lots of love , Gail & John

ARRIVAL: 27.12.2005 - 14:20

Thank you for taking time to come visit us today at the Rotary Club of the Caldwells. Jack is truely an inspiration to all of us. And of course, so are his loving parents, his awesom sister and Jack's caring Grandmother. Warmest Regards, Kevin Hersh

ARRIVAL: 29.12.2005 - 17:08

You have a wonderful team working together... and I love seeing families working with their doctors on treatment, as it affects the entire family - not just the child. My prayers to you all, you're never alone - someone's always with you.

ARRIVAL: 14.01.2006 - 20:55

Jack Boubie!

I just heard that your rode the school bus ... I am so proud of you! I love the picture your Mom took of you getting off the bus. I am going to print it and hang it in my office and whenever I am having a bad day, I will look at that picture and all my troubles will go away!

Love you (and of course Tina too)!

ARRIVAL: 14.01.2006 - 22:19

Hey Jackie,

I love the picture of you on the school bus!! What a big boy you are! I am so glad the treatment is coming soon. I am going to miss you so much, but me and Vinnie will come to Philly to visit you!! Do you know how much Aunt Bubbles truly loves you?

WITH ALL MY HEART!!!

Aunt Bubbles

ARRIVAL: 06.02.2006 - 10:20

I met you at CHOP in the Day Medicine Unit last week and have been thinking about you since. I have visited the website many times and am sorry to hear that Jack is in the hospital with a stomach virus. I wish him a speedy recovery. We did purchase bracelets and have sold what we bought at our Super Bowl party yesterday. We will try to continue to support Jack and sell more bracelets. Wishing you the best...Karen

ARRIVAL: 07.02.2006 - 08:44

Hey Char,

Spoke to "Bubbles" for a bit today. She filled me in on all that's going on with your little Jack and, also, the loss of your Dad. I am so sorry. My thoughts and prayers are with you, your family, and that cute little boy of yours.

Love ya, Patty

ARRIVAL: 08.02.2006 - 20:52

Hey Jack!!! I met you at CHOP this week and decided to check out your website. I had a lot of fun looking at the fish with you on the unit. I also had fun looking at all of the trains you had! By the way, I loved your birthday cake with Thomas on it, you looked so handsome in that picture! Good luck, Jack! You are such an amazing boy

Hey Jackie Boy,

Only 10 more days until you go to Philly for your treatment!! You are the best little boy in the whole wide world!! Me, Uncle Drew, Vinny, James and Ronya love you so much!!

Love
Aunt Bubbles

Hi Jack, I was thinking about you all week. I'm saving pretzels for you for when you come see me again. Or maybe when you come home, I'll come see you anc bring them to you. Would you like that? I hope your feeling wonderful and I'll see you soon.

Love Kitty Cat

Hey Jackie,

How are you? I miss you and think about you all the time. I pray for you always. We will come and visit in Philly as soon as we can!!

Keep smiling and laughing.

I LOVE YOU!!

Aunt Bubbles

My JACKIE-ROO!!!

I'm missing you so much already!! I hope your being a good boy. Zeus and I are going to come see you sometime next week. You better have BIG hugs and BIG kisses for me!! I am so proud of you and I can't wait till you come home. Zeus and I Love you lots and miss you lots. Take care of Mommy my big boy!

Love,
Your Candi-LaLa

Hi Guys,
Just wanted to say Hello and let you know that we are thinking of you and continue to pray for Jack. He is so adorable (and Christina too). will continue to check website for your updates on how Jack is doing.

Our thoughts and prays are with you.
Love, Rob and Mariann

I just wanted you to know that we are praying for all of you. Jack is such a trooper. I love reading how much of a run for your money he gives you Char! It is a testament to his strength of character and will and part of why I feel he will overcome this challenge.

Charlotte, stay strong. Your faith, your love, and your guardian angel will see you through! My best to Roy and Christina holding down the fort in Fairfield. I am sending you a Texas-sized hug and best wishes.

Love to you all,

Janett

Hey Boubie:

You are such a big boy ... I am so proud of you for all you have been going through and you are still keeping that beautiful smile on your face (I am very proud of Tina, Mommy and Daddy too).

Sorry I couldn't come to see you yesterday but I am still not feeling well. As soon as I get better, you bet I'll be down!

I love you!

Cheryl

Hey Boubie:

Mommy tells me what a good boy you have been ... I am so proud of you! I am very proud of Tina too ... you are so lucky to her as your big sister.

Sorry I couldn't come down yesterday but I am still sick. As soon as I get better, you bet I will be down (with lots of kisses)! In the meantime, I will stay in Jersey and get the Tupperware Fundraiser off the ground.

Can't wait to see you ...

Love you,

Cheryl

Way to Go Jack!!! You be strong and stay well. Simon is cheering you on as is his whole family. Hopefully soon you both will be able to say you "had" NEMO. Keep having fun at the hospital and we hope you don't suffer from too many side affects. Hang in there Char we know how rough it can be day and night at the hospital and keeping up on things. Thinking of you all. God Bless. The Gutierrez Family

Dear Jack,

Happy Birthday!

We're praying and we're knocking.

Go Jack!

Andy, Sofia, Paulina & Andres

Hi Jack

I have been thinking about you all weekend, and of course your family too. I am praying for you all ..You have always been such a strong kid, I know you will keep fighting. Love to all.

Trudy

Hey guys, we are thinking about you and praying for you, so are a lot of our friends, take care.

My four year old, Kelli, wanted us to stop by the Prayer Chapel at Church and say a prayer for Jack's recovery. He is in our prayers every night. God Bless
Bob Mensinger

Hey guys, we are thinking about you and praying for you, so are a lot of our friends, take care.

Hi Jack............

I heard it was your birthday the other day. I hope you had a really nice one. Are you feeling a little better? I hope so. I think of you every day. Maybe I can come see you when you come home.

Love Kitty Cat

Hi Char,Roy,Christina,and Jack

I love reading such good news. I knew the first time I met Jack that he was one special little boy. You go Jack keep up the good work and I hope I get to see you all again real soon. Your always in my thoughts and I'll keep praying for more good news.

Love to you all
Carol

Our son, Jackson, also has the NEMO mutation. Unfortunately, we do not have a matched bone marrow donor for him. We're working on that by adding people to the registry and trying to have another child through IVF, so hopefully, we be having a transplant in the next year. Jackson is 4. I've been keeping up with Jack's progress on your blog. I pray for Jack and your family every day. I want you to know that you have an extended "NEMO" family other there that is sending a lot of positive energy your way. This will be the answer for Jack.

Our son, Jackson, also has the NEMO mutation. Unfortunately, we do not have a matched bone marrow donor for him. We're working on that by adding people to the registry and trying to have another child through IVF, so hopefully, we be having a transplant in the next year. Jackson is 4. I've been keeping up with Jack's progress on your blog. I pray for Jack and your family every day. I want you to know that you have an extended "NEMO" family other there that is sending a lot of positive energy your way. This will be the answer for Jack.

I hear there are some pretty good pictures of Jack and I at his playdate in the hospital...They are not on the web site!!!! I hope Jack had a good time with me...I'LL be Back!!! Just a warning...

Love you Jackie! see you soon
Love, Crazy Aunt Mussy

ps Hope your not watching too much porno.

Hi Jack-e-LaLa

I wanted to tell you that Zeus and I had SO MUCH FUN with you yesterday!! I'm so happy that you liked your legos....when we come down zeus and I will help you build something else. I can't wait to see you again....I MISS YOU A WHOLE BUNCH!!! but I really miss having lunch with you everyday when I come home from work. KISSES and HUGS!!

Love You
Candi-LaLa and Zeus-y

Hope today was good for you Jack. I would like to come have a play date with you soon...If your mothers nerves can handle it!! Maybe we can finger paint or something good like that. I saw the pictures of the crazy people in your room, one looks a little like me but I'm not that crazy am I??? I'll give you a call soon, be good, take your meds, and don't forget to EAT!
Love and prayers to all,
Crazy Aunt Mussy

ps hi char roy and tina

Hi All,

The way I see it Jack won the fight with the candy bar.lol Way to go Jack, you're just so cute. Now show that infection how tough you really are.
God Bless and love to all
Carol

Boubie:

Keep up the fight! I love you and hope to see you soon. Miss you.

Love,
Cheryl

P.S.: Kiss your mommy for me.

Hi Jack and Family! I think of you everyday, several times a day, and come here to check on you as often as I can. I am so happy things have gone "relatively" well and look forward to the day I come on to see the news that you have exceeded all expectations and are on your way home!!! Please know, we are here for you and thinking of you. Give Mommy and Daddy and big sis a hug for us...they need our love and prayers as much as you do...we love you!!!

Nancy, Joe, Tyler and Hunter

Hey Char,
I am glad to hear Jack is feeling better. Hope you are well too. Have fun with Christina this week on your girls week. Happy Easter to all of you. Love and prayers to Jack.

Sorry to hear Big Jackie wasn't feeling too great the last couple of days. I have been praying real hard for the engraftment...good things come to those who wait...Still looking forward to another play date Jack...I think the Easter Bunny might bring those finger paints! See You Soon
xoxoxox
Love,
Crazy Aunt Mussy

My thoughts and prayers are with all of you. I hope this weekend brings great things. Happy Easter to all.
God bless
Love Carol

Char
I have been keeping posted on the blog (i think it great you have it to keep us all in the loop)
Have as good an Easter as possible, and have a great week with Christina Philly should be alright outside the hospital.
Our prayers are with you

Hi all

Have been reading daily and praying for all of you. Jack is always full of surprises and one to make us wait for what we want. Hopefully you all had a great Easter and I hope the Easter bunny brought more then chocolate(signs of engraftment would be great). I will call you soon. Love to all. P.S. Charlotte have a great b day, I know it is somewhere around now, hope I did not miss it.

Love and hugs Trudy

Boubie:

Stay strong ...

Love you,

Cheryl

hi,jack we bought braslets. I am praying for you

Charlotte:

40 years ago today, we were all blessed! You are a strong, devoted, beautiful mother, daughter, wife, sister, aunt, and FRIEND.

Happy Birthday!

Love You,

Cheryl

Hi jack i hope your sister got my email. Best wishes
love yah

alexa

Hi Charlotte,

Happy Birthday :-) hope you had a great day.
I'm praying things turn for the better real soon.
Love to all
Carol

Dear Jack,
I hope you feel better. I hope the Doctors find a cure.

Hi jack its me again, i told my class about you and suggested that we start a little fundraiser.
I will be selling old cloths that dont fit me and my brother anymore.
i'll find out where to send the money when i'm finished.
Best of luck and wishes.

Love always Alexa

Happy Birthday Char! I thought about you all day. I hope you enjoyed your day with Christina. I wish you all the best. I am staying tuned and praying for all of you. I think Jack can count on a future of giving IV's. He looks like a pro. It is time he turned the tables on everyone.

Our love to you all,

Janett and the rest of the Checo bunch

Hey Jackster, It was good to see you yesterday. I love to do arts and crafts with you! Next time I come I will bring the paint chips for a new room color....I was thinking some big clouds and trains on those walls...I know your mother will have a fit, but your the man!
Char, welcome to the world of 40 something....from now on people wiill say "oh my goodness, you don't look that OLD!"
Love you lots,
Crazy Aunt Mussy

ps i was thinking a banana yellow.........

I love the Yankees and I love Jack! Its time to hit the homer Jack, I know you can do it, your the best and you have a great team.
Love to all
Carol

Hey guys,
What a great webpage.....Just wanted to let you know that my prayers are going up and blessing will come down....Jack is just the cutest little man......and the Biggest fighter...I know he will work those cells....Like you said ...he isnt going to make it easy.....although easy would be nice Im sure....Stay strong....Hugs N Prayers always!

3 words
WAY TO GO........
Buddy you are the man..... what wondeful news.....Keeping the prayers going!

Holy Mac's and Roni's!!!! Congrats to Jack the man!! and all his strong hard working cells and bless the heart of that magnificent donor......Prayer is a powerful thing and will get us all through this bump in the road. I think I've worn through the rosary beads!! 5% will come faster than you think....He's an amazing child and will continue to do well.....we will all watch him do it.
All my love and prayers,
Aunt Mussy
(mugzie)

Who's better than you Boubie?

Keep up the fight and I'll keep up the prayers!

Love you.

Hi Jackie Boy!!

Who loves you and those strong cells best? I DO!!!

It was fun seeing you last week, even though you couldn't have cared less that I was there. That Mugsy took up all our time! She is tooo crazy! I think my parents found her somewhere, she can't be related to me!! I LOVE LOVE LOVE YOU!! I can't wait for you to come home. Vincent, James and Ronya miss you and can't wait to see you soon!
Let's go to Bonzai when you come home, ok?!

Love you lots, and Uncle Drew does too
Aunt Bubbles

Hey Buddy, Im sorry to hear about that nasty fever.....Ill keep on saying those prayers that this annoying fever see's its way right outta CHOP.....I have to tell you that you truely are the little warrior.......get lots of hugs and kiss's from mommy and daddy.....there always the best! = )

Hi Jackie,

I miss you. I am waiting for you to come home so we can play. Maybe in a few months when you are feeling better, we can have another sleep over like before!

Love your friend and cousin,
James

Way to go on the cells Jack. Your the best. Now fight that infection, make more cells and come on home.
Great thing to ask for Charoltte. I have been on the Bone Marrow Registry for over 15 years now and I have to say its one of the best things I have ever done. How great would it be to be able to help someone in that way? The more people on it the better. I'll keep praying, knocking and crossing. lol

Love to all
Carol

Hi Jackie,

Just wanted to say I LOVE YOU!!! I miss you and will see you soon!!!

Love
Aunt Bubbles

Love you Jack. Had to tell you I saw the first baby bambis today. They must have just been born because their mother was cleaning them and they could hardly walk. Yes Jack there was twins. More will be born soon. They are waiting for you. Get that transplant booster so you can get up here to northern pa and see all your bambi friends. They miss you just like us.
Love you always
Diney, Jesse and Jamie (fat cat, gabby and scutch too!)

Poop on the Potty!!!!! Way to go Jackie!! Now if we can only train daddy.....I miss you Jackie. I want to come have a lazer sword fight with you....we might have to move the furniture.....Denny and Tracy look almost as crazy as me!! I'll come down next week one day, I'll bring Aunt Bubbles if you want. I'm glad to hear that your feeling better.....just keep growing those cells and maybe they'll spring you soon!!!!! Knock on Wood!!
Love you, miss you
Crazy aunt Mugzie

Boubie:

Hitting the potty ... I am so proud of you!

Can't wait to tell Baby Jordan ... I am sure she, and Aunt Jodi, will be proud of you too!

Love you lots!

Aunt Cheryl

Jack you make people smile, your just so cute.
My prayers are with you. God bless you, the donor, and your family.

Love
Carol

Today is your day Charolette,

Wishing you a very special Mother's Day....today and always! Your a wonderful Mom!

Hi everyone

Sorry I have not written, but I have been folowing your updates daily. JAck is a fighter and I know he will continue to be one. I can't believe he is using the potty , how exciting and in time for Mother's Day.

Hope you all have a great day and Char, myself and three other therpaists from EIP are going to become donors if they accept us. Wish I could do more.

Love and hugs to all

Trudy

Hi everyone

Sorry I have not written, but I have been folowing your updates daily. JAck is a fighter and I know he will continue to be one. I can't believe he is using the potty , how exciting and in time for Mother's Day.

Hope you all have a great day and Char, myself and three other therpaists from EIP are going to become donors if they accept us. Wish I could do more.

Love and hugs to all

Trudy

Wanted to say Hi to some really great people.....
Jack still hope your making those long days lots of fun.......Im sure with Denny, Tracey and Kim its all about the "FUN"......stay cute......Tell Mommy I hope she is feeling better real soon! Hugs N Prayers!

Hi Jack and Charlotte,

So sorry we didn't get to say goodbye on Wednesday, May 10. Dr. Brown came in early and said, "Well, Matthew you are out of here!" We were on the road by 10 am. Your shade was pulled and the room was dark and I didn't want to wake either of you. Good to hear Jack is doing well. I saw Roy on Tuesday, he gave me a cure Jack bracelet and told me that you were home with a stomach thing. Ewwwww!! Hope you are feeling better. We will be at clinic every Tuesday for the next 12 weeks, and possibly every Thursday or Friday for maybe 5 weeks. We will stop in and see you both. Take care, keep up the fight Jack, you can do it.

Jack, you are one special little boy. I'm praying engraphing is quick and you get to go home real soon.

Love to all
Carol

Jack,

In my 41 years I have never met someone I have so much admiration for. You have made me believe in so many things. You have shown me how good people can really be. You have taught me about love, how to persevere, and that miracles really do happen. I am so honored and proud that you call me "Aunt". You have touched my life in so many ways and I am a richer person just for having you in my life.

I will love you til the end of time!!

Forever and Always,
Aunt Julie (Bubbles)

Hi Jack-a-Roo!!!!

Well let me start by saying I MISS YOU SOOOOOOOO MUCH!!! Zeus misses you waking him up in the morning too, he can't wait till you can do that again. You brighten up all my days with all the phone calls you make to me...LOL!!! I am so proud of you....your such a tough little man!! I want to say Thank You to you and mommy for the bracelets, they are beautiful. And Jackie I must say you sang the Alphabet sooooo Beautifully to me on the phone...I couldnt beleive it...your my big boy!!! Zeus and I hope you come home soon!! We LOVE YOU SOOOOO MUCH!!! And be an extra good boy for Mommy and Daddy!!

Love You (Big Hugs and Kisses)
Candi-LaLa and Zeus-ie

Hey guys!! Jack I am sooo glad that you got home! I wasn't at work that day but I had a smile on my face that whole night when I knew you went home! Take care always!!

Love Fluffy Wuffy (Nurse Nicole)

I love you so so so so so so so much! You are doing such a great job! Keep It Up.

Roy, Charlotte, Christina & Jack

We've been following Jack's roller coaster progress,
holding our breath, crossing our fingers and knocking on all available surfaces, wood and otherwise. You all are in our thoughts and prayers daily.
Joe & Sue Decker

Christina:

Happy Birthday ... you certainly deserved a day of suprises!

I am so proud of you!

Love you,

Cheryl

Jack & Christina,

That was such a great picture of Christina & Jack. It was great to see the look on her face. I'm so glad you went home yesterday. We miss you all.(but we don't want you back)Happy Birthday Christina. I will talk to you soon.
Love, Dana & Alyssa
P.S we are going home tomorrow!!! YEAH

Happy Bday Christina. What a great picturs. I hope you enjoyed her 8th birthday--you all deserve only the best. Looking forward to seeing you on tv tomorrow night and I can't wait till you are all in NJ so I can give you all hugs.

Love to all and again Happy Happy Birthday princess

We are so happy to hear you went home, again. This time stay there. Happy Birthday Christina, what a great gift to have Mom and Jack home. We are doing well and will be in clinic on Tuesday. Maybe we will see you then. Take care, God bless and we continue to pray for all of you.

Cathyie and Matthew

Hey Jack and Family,
I saw your story on the Discovery Health Channel tonight and was amazed at Jack's strength and his parents' will to find a diagnosis. It is simply amazing. I see that he is now in the middle of recovering from the BMT and I will keep his healing in my prayers.

Hey Jack

I hope you are feeling better. Your in my prayers and with all your kooky aunts around you im sure they are keeping on eye on you and bringing a smile to all of you. I saw you on TV last nite along with your mom and aunt julie (bubbles)it informed me on info i didnt know. My wishes are only for the best for you and your family. So Hello to charlotte, aunt julie (bubbles) and also crazy aunt mussy i have known them all for a very long time. Well i just wanted to say from my family to yours i hope with all my heart everything goes great for you. Take care and hope to hear from you soon.

sincerely
karen (bartholomew) mitchell

Hi, Jack!

I'm glad we are not on an airplane. We'd surely be in trouble with the Sky marshalls.

Well, I just wanted to tell you that there are a lot of people talking to God about you. I call these people Prayer Warriors. Your Uncle Joe told us about you and asked us to ask God to help you to get all better. God will help your doctor... Dr. Orange to find out how to do this. So I guess we should be praying for Doctor Orange too.

Love,
Anita

we are so happy that all the prayers have been answered. God Bless. My 4 year old Kelli still tells everyone to pray for Jack.

Well CONGRATS on being home.....there really isnt any place like it.....Now have the time of your life.....well with in transplant limits of course.....Tell Jack Tyler says hello...and we will see you again in clinic......Now have a faboulous weekend! Hugs N Prayers!

PS....steal away those graphics all you want missy.....there fun arent they!

Welcome home Jack and Char, I'm so happy for all of you. Christina I hope you had a great birthday.

God bless you all
Love Carol

Jack and Kristina, I cant' begin to find the words to tell you how lucky you are to have a daddy like you have. Your too young to realize what sacrifices he and mom have made to make sure you are all together happy and healthy. God only gives you what you can handle and I think he has done just fine. Please hug him and kiss him and tickle him and let him know all will be fine from now on. Roy, Have a wonderful fathers day with your family and Char, you deserve it!!
Love,
Crazy Aunt Mussy
ps...don't watch too much porno

Hi,

I just saw your family's story on the Discovery Health Channel. As a mother of 3 kids myself, I cannot imagine the fear and frustration you have gone through. I hope that your precious son recovers fully to a beautiful life. I have always thought I am incredibly lucky to be blessed with 3 healthy kids. There by the grace of God we go. Blessings to your family, and my prayers are with you.

Char,

I hope you know that I've been keeping up on Jack's condition and I did see the segment on the Discovery Channel... We've recently had our own medical issues but nothing compared to what you and your family have been going through. I pray for you, little Jack, Roy, Christina and your family often. May God Bless all of you... and Happy belated 40th!

We just saw the show yesterday on the discovery channel. So excited to get your greeting on our blog on the same day. It was very interesting to watch your story.Thank you for your prayers. It is nice to know there are other nemo parents out there and great to help to diagnose and treat future nemo kids. You have already helped people with the airing. God bless and good luck and thank you for the invitation to talk.
The Blackburn family

I was reading about you all on the message board for ED at yahoo.com and wanted to see the show on Discovery Health about your son but I missed it. Maybe they will show it again soon.
My son is 8 years old and also has ED. We aren't certain what type of ED he has but we think it's tooth & nail. There are actually 2 types of tooth & nail and no genetic testing to determine which one yet. We are hopeful there will be testing available soon. Luke has pegged-shaped baby teeth, abnormal fingernails and toenails, and no permanent teeth at all. Have you all been in touch with the N.F.E.D.? If not, take a look at their website.. www.nfed.org .. They are a wonderful organization for families with ED.
I wish the best for you and your family. We will be certanily be praying for you in the days to come.

Hi All,
I'm so happy to hear that things are still going so well. My best to you all.
Love
Carol

Hey Jack!!!! It's been soooo long since I have written to you so i thought it was time......I'm so happy that you are feeling better and better. I bet you love being home and driving your mother out of her mind....what does she want, thats part of your job! Moms are moms so kids can try their best to send them to the brink of the looney bin! Thats why I'm so nuts, I'm a mom!!
Love you Jack
Talk to you soon,
Crazy Aunt Mussy

ps Don't Step In The Puke!!

Jack,

I just saw your story on the Discovery Channel, you are too cute. Mom and Dad I can relate to you some what, my son had bowel surgery when he was a week old at Children's Hospital of Philadelphia. Scary. He is 3 years old and has had no problems since.

Thanks for having us we had GREAT TIME......the boys had so much fun....and Tyler got to swim for the first time in 2 years.....Jack your just doing so well.....and are the cutest ever.....Christina your a fish outta water thats for sure keep swimming..(Tyler talks about you all the time)....Cant wait till next time!.....Keep smiling everyone!!!!!

Hi Jack! It's Anne, your PT from CHOP. I've been checking out your website and it looks like you are doing really well! I hope you are having lots of fun this summer and playing with Thomas a lot! Say Hi to your mom and dad. I miss riding bikes with you!! Bye Jack!

Hi All,

100% doner cells! That's great news, I'm so happy for all of you. I was also happy to read that Christina's arm isn't broken.
God bless
love Carol

Just wanted you to know I am thinking of you guys! Hopefully your stay is short and you can be on your way....Call if you need me for anything! Hugs N Prayers!

I just wanted you to know we are thinking of you.You are in our thoughts and prayers everyday.

Checking in to see how the little man is doing...Always thinking of you guys! Have a great week!

Hi there Jack! It's Sarah, daddy's cousin. Just wanted to say hi! This is a great website! Those pictures of you are mighty cute! Let me know if you want more food or milk for your tea!!!

Boubie:

Keep up the fight!

Love you,

Cheryl

I will continue to visit enjoyed the reading thanks

I've been thinking of you all and wanted to drop by. We were able to see your show on Discovery Health and were so touched by your story.

Not sure if you remember us, but we contacted you a few months ago when we first started looking at NEMO. Seems like our family is affected too. We'll be heading to the NIH to make a game plan.

Hang in there, you guys are an inspiration!

Sending hugs and prayers your way...
Kristin (and the rest of the Smith gang)

Hey there--Haven't seen you in a while and that's a GREAT thing! Hope all is well at home and you are feeling great. Keep up the good work champ!

hey wuz up!how is everything hanging with jack?danaisia haven't got any better nor worst.she is on a lot of meds.for example hal & lipids(iv nutrition,vecuronium,morphine,insulin,amlodipine,magnesiumgluconate,tacrolimus,foscarcet,vitamins,lansoprazole,cotrimoxazole,voriconazole,amilkacin,prednisolone,linezolid,imipnem & cilastatin,caspfungin,azithromycin,and lorazepam.the iv access she has now is (L)hand arterial line(for monitor blood pressure and draw blood,(L)thigh femoral line,(L)foot iv,(R)chest port(all for medications).nasogastric tube in(L)nose for feeds,foley catheter in bladder to measure unrine output,oscillator with nitrc oxide to help with breathing,endotracheal tube-breathing tube in mouth,and 2 chest tubes on(R)side.so i'm basicily taking it day by day.also, not to forget she getting catheter in neck very soon.hang in there jack! danaisia and dad

Hi!
Have tried a few times, hopefully we will get successful this time.
I also have a 5 year od son Rhys, he was diagnosed NEMO over a year ago, however he also has TB so his Doctors are wary of a BMT as he would be more at risk during conditioning.
I hope you do not mind us staying in touch, our love and wishes to you all!!

Hi everyone

i have been reading daily and I am glad to hear that things are starting to look up again. Maybe when you get home I can come by for a visit, I miss you all and think of you daily. Wishes for only good news. Hope to talk to you soon

Love to all

Trudy

Jack and Family,
My name is Rachel and I was one of Mr. Browns students and i heard about Jack through Jacobs website. I just wanted to say that my family and I will be praying for you in the hopes that everything will be okay. Just remember to smile and stay strong for Jack and to let God do his work.
Sincerely,
Rachel

I have the pleasure of helping Jack every time he comes in to the Pharmacy, and it is always a delight to see him! Hang in there kiddo!

~Ankur

Hi Again!!
Sorry to hear about the litte guy having to go to hospital again.. I hope he is better and home with his loving family.
Our love and thoughts from over the ocean!!!
From the UK. Kevin, Dawn Rhys and Morgan

So glad to see jack out of the hospital, he looks
great with his big sister in the Santa photos....
we are still praying, crossing and knocking for
you all.Hope you have a wonderful Christmas.God bless.
Joe & Sue

My wish for Christmas is that God Bless Jack with health and finally give all of you the peace you deserve. I hope that Jack can soon just be a happy and healthy little boy that loves to make his parent crazy. Charlotte, our love to you, Roy, Christina, and Jack during this time and hugs to all!

Hi,
i am so sorry to hear about your little boy but am glad to hear he is getting better.The reason I'm writing is because I was watching DHC and saw your story and almost cryed as I was watching because my 2 month old son has almost every symptom Jack had and the doctors have yet to diagnios him with anything other than a protien intolerance. Needless to say i was very scared when I saw your story and recorded it to show to my doctor.Thank you so much for showing your story it might just be an answer to our prayers. Sincerly
Rachelle Whitney

Forever in our thoughts!!
Glad they found out what it was, now they can treat it, unusual for it to be in the gut however our children are very unusual.
Rhys should be having his BMT in April, you will be out and on the home run by then!!
love from us all in Wales UK XXX

Well, leave it to a NEMO boy to keep everyone on their toes! I pray the new protocol improves things quickly!

Thank you for continuing to check on us throughout your own journey.

Sending hugs and prayers from The Smiths

Hey Jackie,

I miss you and love you. Hopefully we will see you soon.

Love Always and Forever,

Bubbles

Dear Jack and family,

My name is Kelly and my son Samuel was just diagnosed with NEMO in May of 2006. You and your family are always in our thoughts and prayers, and you have an overflowing of followers and supporters in New Mexico! Continue to fight the good fight, and know that you and your family will always be taken care of!

Kelly Dunbar
Albuquerque, New Mexico
www.caringbridge.com (samueldunbar)

Hi Jack and family,

We want you to know we are thinking of you and hoping that you feel better very soon. Charlotte, Will had such a nice conversation with you the other day. He and I both appreciate all the information you gave him. Jack, many prayers for your health and that you will be able to walk very soon without any pain.
God Bless,
The Dunbar Family

Hi Jack,

We just wanted you to know we are thinking of you and that you are in our thoughts and prayers every day!
With love,
The Dunbar Family

Hi Jack,

Wishing you a very speedy recovery from the pneumonia and hope you feel better real soon. You just missed your doctors in Philadelphia so much and wanted to see them, didn't you???? As always, we will be praying for you.
With Love,
Kelly Dunbar
www.caringbridge.org/visit/samueldunbar

Our prayers and thoughts are with all of you. Praying hard down here on the fifth floor.

Love and prayers,

Cathyie and Matthre

Hey Jack,
We are hoping for a speedy recovery and a very short stay in the ICU. You are in our prayers.
God Bless,
Kelly Dunbar

My words fail me at this time. I send you all of our love and sympathy. God blessed you with the miracle of Jack. A child that fought bravely and with a spirit I have never seen before. Charlotte, Roy, Christina and all of the family have my deepest sympathy for this irreplaceable loss. Jack will be with you always and is at peace with his Opa. Be strong in your faith and love eachother in his memory. I am here for you regardless of the 1500 miles that separate us.

You are all in our prayers. Charlotte, you are the sister I never had. I feel your pain and am here for you always. I am so glad I had the privilege of seeing you last month and seeing Jack & Christina again. I am far only in miles - my heart is with you now and always.

With love,

Janett, Pedro, Alex, Nicolas and Elisa

Dear Hagelin Family,
My heart is so saddened today. There are no words to express my sympathy..I can't imagine what you are feeling. Just please know that your family is surrounded by many prayers and much love.
God Bless,
The Dunbar Family

Boubie:

In your four short years, you have taught me strength, determination, and most importantly, how to love unconditionally ... you were a true inspiration to all whose lives you touched ... you will be in my heart forever!

I Love You,

Cheryl

Our sympathy goes out to all of you. We will continue to keep your family in our prayers.
Mensinger Family
The Woodlands, TX

Jack,

You will never know how much I love you. Heaven has the most special angel. I've said it before, you taught me so many things in the 4 1/2 years I knew you. I love you to the depth of my soul and you will be forever in my heart. I will carry you with me always.

Until we meet again, blow bubbles in heaven and think of me.

Forever and ever and ever,
Aunt Bubbles

I am so very sad--Jack won my heart when I saw the Mystery Diagnosis program, and I have followed his progress ever since. My heart aches for you all. You have your own angel now watching you from heaven.

My prayers are with you and your family.
God bless,
Sue Pompetti

Please know you are in my thoughts and prayers during this time. Jack's outstanding personality will remain with me always. He was truly loved and will be missed. Heaven is lucky to have an such a special angel!

Just stopped crying and found enough strenth to send your wonderful family this message from Rhys, Morgan, Kevin and Dawn fro over the pond in Wales the UK. Nobody has worked as hard as charllotte to get the word about NEMO, I will certainly continue that work over here and Europe, I have set up the NEMO foundation to find a Cure and create awareness so that other families are cared for and helped. thankyou for your inspiration, I cycle for 400 miles as of the 1st of April to meet Proffessor Casanova in Paris and I will do with a heavy heart. No words are good enough but our hearts and prayers are with you always.

Deepest sympathy from Wales UK

Nick

I was just checking up on Jack after flying him into CHOP 2 weeks ago. I am so saddened to see that he has passed away. What a lovely little boy, & wonderful family to deal with. Im so sorry we couldnt do more for him. My thoughts & prayers are with you.

Clive CHOP Transport RN

Roy, Charlotte, Christina
We were saddened to hear of Jack's passing.
You guys are amazing and I'm sure there are
lots of people out there who you might not know
but who know you through the tv show or the
website.Thank you for sharing Jack with all of
us.Thank you for showing us how good people really are. Seeing Jack on a fire truck, on Santa's lap with Christina, surrounded by his
biker friends or strutting his stuff in the Mummer's day parade was truly uplifting.
We could see the love that Jack's medical
team had for him, diaper heads and all.
Never saw a picture of Jack and Christina that
they were not both smiling, what a special bond.
I'm sure that when the angel's came for him they
brought his grandpa Sal along to hold his hand so he would'nt be afraid.
Our Love and Sympathy, Joe & Sue

I will never forget our final ride on Ladder 1 where you sat on my lap with that huge smile on your face! I will take that with me forever!

Tim Connolly
Fairfield Fire Department

Charlotte
I was so sorry to hear of Jack's passing. Betsy sent me the news. We are in Arizona at the moment but our hearts are with you as you go through this most difficult time.

You and your family have been inspirational in your efforts to find a cure for Jack. I know that the knowledge that science has gained makes Jack's short life a blessing.

Fran and Dave Patton

I'm so very sorry for your loss. My words can't help, I know. Hopefully my prayers of comfort will touch you somehow.

My brother Nick just emailed me Jack's website. My brother is the Dad of Andreas Giammarino, a little boy who was only 8 months old when he passed away on New Year's Eve, 2002. Christmas Day he was the picture of health...and a week later he was gone. Andreas had suffered from immune deficiencies and died of massive infection.

Several years later his Mom gave birth to another boy, who also has immune deficiencies. Several months ago, baby Giovanni was diagnosed with NEMO and ED. Their mother is a carrier, and did not know. So we know now that Andreas passed of the same awful disease.

It is so difficult to hear of these baby boys undergoing such hardships and pain at such a young age. Keep strong for your little girl, and find confort in the love of your family. I can only say, again, how very sorry I am.

Lianne McMahan

I read about Jack from Dana on Alyssa's site. I check on Alyssa every day and pray for her and have been praying for Jack too. I was saddened to hear that he passed away and I will pray that God will bless you and ease your heart.

Sincerely,
The Fusco Family, South Plainfield, NJ

You all are in my thoughts & prayers. Jack was a true inspiration as all the NEMO boys, the strength & courage you all have has inspired me & will continue to inspire me. On the day of Jack's passing I had organized my first bone marrow drive & added 197 people to the registry, I will do my best to continue to raise awareness, god bless you all.
Annie Brown
Campton, NH

I am the Director of the New Hampshire Chapter of Save Giovanni, an 8 month old boy suffering from NEMO as well. You have his link on your front page. I just want to say that you all are in our thoughts and prayers and if there is anything that you need, please let me know!!!!

~Carolyn

Dear Roy and family,
We would like to send our deepest sympathies on the loss of your precious little boy. Our thoughts and prays are with you and your family.
God Bless,
Bonnie and Larry Zeh and family

We've never met, but our next door neighbor has been diagnosed with NEMO. We continue to pray for him and for all those who have been affected by this disease. During this difficult time, may God's peace surround you and may you feel the many prayers that are being said for your family.

Dear Hagelin Family,

Our prayers are with you. Your family, and Jack in particular, has been a true inspiration to us as our nephew Jacob battles NEMO. We've prayed for Jack for many months and will continue to pray for your family during this difficult time. Please know that Jack serves as a true inspiration in our darkest and most triumphant times. He is a true hero. God bless you and keep you.
Bethan and Steve "Brown" DeCaspers

We are thinking of you all at this very difficult time.
Our heartfelt sympathy goes out to you and your family. Let the memory of Jack live on with this website!!

The Cornelison family
Springfield, NJ

Dear Charlotte and Roy,
I just opened up the Star-Ledger tonight and was shocked to see the obituary for your son Jack. I remember in the CHOP day hospital what an amazing conversationalist he was and how he sounded older that his years. We first met you on the CHOP BMT wing in April and May 2006 and after that then saw you and Jack periodically in the day hospital or around CHOP. Our daughter Laura's neuroblastoma was very resistant to treatment and we are still stunned from her passing on December 22, 2006
http://www.caringbridge.org/visit/laurastiles
Having recently experienced the loss of our daughter I can imagine well the feelings of unreality, pain and shock you are going through. Jack will always be in your heart. With deepest sympathy, Mara Stiles, fellow CHOP parent, mother of angel Laura (10/27/1994-12/22/2006)

My heart aches for you as you mourn the earthly loss of your precious son.

I heard of his passing through Connor's page. I "met" Kristin a couple of weeks ago at the pedPID yahoo group after I received the news that my 5yo daughter has mbl deficiency. The other three kiddos, my husband, and I are awaiting to find out the results of our testing.

My oldest son, Kaden, died almost two years ago when he was ten. I believe he had an immune deficiency as he suffered through recurrent staph infections.

Anyway, I just wanted you to know that I am so sorry for your pain. I will keep you in my prayers. May the peace of Christ comfort you through your pain.

With my deepest sympathy, Katherine

To Jacks Family,

I am so sorry for your loss. No words can take away your pain or make this part of your journey easier. Carry the love with you and in your hearts and that's how he will always be with you.

Fondly,
Courtney Wohlgemuth

Dear Family of Jack"s,

We also have never met but i work with a family member of yours in south jersey. I found out about your site from him. I am very sad for your loss and wish to extend my sympathy to all of you. Jack im sure was very proud to have helped others understand this disease. happy memories you will all have of him.

Joan Langlois

I'm sorry for your loss. My prayers are with you.

Dear Family
I recently became friend with Giovanni Guglielmo's family. He is another baby with NEMO.
Please receive my condolences for your loss.
I am sure your adorable kid is in heaven praying for you and for all the other babies thta are suffering.
I will keep him in my prayers.
You had to go thru' a hard life but you have also been blessed by his presence in your life. He will always be with you, protecting you from above.
My hugs
Elena

Dear Family
I recently became friend with Giovanni Guglielmo's family. He is another baby with NEMO.
Please receive my condolences for your loss.
I am sure your adorable kid is in heaven praying for you and for all the other babies thta are suffering.
I will keep him in my prayers.
You had to go thru' a hard life but you have also been blessed by his presence in your life. He will always be with you, protecting you from above.
My hugs
Elena

I just wanted to express my family and my condolences for the loss of your adorable little boy, Jack.
Deanna, Dave, Jimmy, Christina and Erica Turnquist
Arlington, MA

Dear Hagelins,

We've been thinking of you so much, our hearts are breaking for you. When the kids and I were talking about Jack yesterday, we decided that the quote from Conner's website really fits him...

"Do not fear death, but rather the unlived life. You don't have to live forever... you just have to live."

Although Jack did have a short life, he sure did know how to live! In 4-1/2 years Jack helped change the world - now that's what we call living!

Thank you for sharing your story and helping us understand more about NEMO. Thank you for being there for us, even at times when your own journey was difficult.

We'll check in soon. Please let us know if we can do anything.

With love from Kristin, Chris, Conner, Evan, Hayden and Kelsey Smith

I am so sorry for your loss. I remember Jack fondly from the days when he was treated by us at the Goryeb Children's Hospital. He was the sweetest little boy! I remember hearing his voice saying "bubbles!" Jack will always be remembered and hold a special part in the hearts of all that had the pleasure of knowing him.

Sincerely,
Jennifer McKenny
Child Life Specialist
Goryeb Children's Hospital

No words can express how you are feeling. I am so sorry for your loss. I met you and your son at Chop, during 2006-2007. My son Gabriel who had neuroblastoma was getting a stem cell transplant when Jack was. I remember seeing him through the window and in the hall with his mask going to the toy room. I remember on one occassion you liked my son's shirt. I don't remember if it said chemo sucks and bald heads are sexy or I'm the good one my sister is the brat. My son Gabriel who was also 4 1/2 passed away January 13th 2007 at chop due to his cancer relapse and respiratory and kidney failure. We never really talked but we passed numberous times in the hall. Jack was a beautiful boy and now he is free with the angels running laughing and being a 4 year old without pain. I know I would give anything to have my son with me here as I am sure you do, but my only answer to things is they were just too perfect for this world and brought much love. I don't understand why god chose such beautiful children to go to heaven, taking them from loving homes with all the cruelness in this world. I guess God just has a bigger plan that we as parents just cannot understand. They say with time things get easier, but nothing will replace the loss of a child. I am sure there were many loving moments with Jack just not enough years. All I know is that there are alot of 3 and 4 year old girls and boys that have left this world to ascend to the heavens in the past 6 mos so I know Jack has alot of angels with him including my sweet angel Gabriel. Remember it is never goodbye only see you later. We will be reunited with our children it Gods time. If you ever need anything or someone who is going through this as well feel free to contact me via email or my son's carepage at www.carepages.com GabrielJudd.

Dear all of the Hagelin Family,

We can not imagine the loss you are experiencing now, and am so very, very sorry.

May Jack's legacy continue to blossom to benefit others in need.

The Muzzys

I heard about Jack's site from our cousin Alyssa Ricciardi. I am so sorry to hear about your loss. Jack is a hero to all. We continue to pray and think about your family every day..

All our thoughts are with you.

Carrie and Clemente Sivo

I am terribly sorry for your loss and my prayer are with your family. Your son fought a valiant fight and thank you for sharing your journey with us. Your bravery as a family and his courage as a little boy have given me strength.

I just wanted to say i'm very sorry for your lost, and wish all of you the best of luck through out the years to come. you are a strong family in my eyes and Tina's a very lucky girl to have the both of you as parents.

Kia (i'll miss you guys)

Roy, Charlotte & Christina:
You have been heavy on my mind for the last week. I wish I had the perfect words to say but I don't. I just want you to know that you have touched the lives of so many people, including mine. You are an inspiration. You have demonstrated through your love and devotion to your family what is really important in life. You are in my prayers. May God give you the stregnth to get through this time.

I just want you to know that jack made a difference in my life.I will never forget jack he kept me wanting to go to work.He had the best parents any kid could ever ask for.I Admired him and his parents gave me when he was in my care.I hope he changed other co-workers lives as much as he has changed mine, so other sick kids can experience the same love that he received from me.Roy and charlette i just want you to know that your family will always be in my thoughts and i will never forget the bond that I had with jack.

Just wanted to wish you a Happy Easter...Im sure with your first holiday with out our buddy Jack was difficult...but always know the joy he brought to each of us all the time....One minute at a time....no more no less! Hugs

We talk about Jack almost every day. Somehow he just pops into our conversations.
Our hearts hurt so much for all of you.
It is because of special children like Jack that we do what we do!
We consider it a gift that we had the opportunity to know all of you and we will never forget the wonderful Hagelin family.
You are in our thoughts and prayers.
Love from Jack's girls on Day Med.

Charlotte and Roy,

I will always remember Jack. He gave so much to so many every day even when he was feeling rotten. His smile and his laugh will stay in my heart forever. I feel fortunate to have gotten to take care of Jack. Your family has been and will remain in my heart and prayers.

Just wanted to let you guys know I am thinking about you. Things aren't the same without my buddy to visit anymore. He is my hero!! You guys are my heros, amazing parents and family. Please never hesitate to let me know if you need anything. Jack is an inspiration! He is missed! Loves to the family.

Dear family,
I wanted to let you know we are thinking of you and you are in my prayers. Jack will be missed and never forgotten. Keith still has that picture of the two of them in his room. Please call me are email me if you need to talk. You were always there for me and gave me hope and I would like to be there for you.
Letecia Jones

I've thought a lot about what to write here. I posted one post when I first heard about Jack's passing, and I was short and sympathetic.

It's really tough to know what to say in cirucmstances such as this. I became acquainted with Jack via Giovanni Guglielmo and my first thoughts were to say that I got over here too late, but thats wrong. There is no such scenario as being too late. Jack may no longer physically be with us, but his legacy, his strength, his effect he had on eveyrone will always be here and continue through generations.

It makes me realize that these beautiful babies are here for a reason, whether its to educate us about NEMO, something else, or to serve as a model, the've accomplished more than a lot of us will ever do and with more class, grace, and strength the people 20x their age. Your son held the torch for the kids who are going to come after him and he made an impression that can never be erased from our memories.

I've gone through the entire blog twice so far and every time I finish, I am crying, but I'm also happy because I know while we wish he could stay here physically forever, he is at peace now and he's being rewarded for a job well done. A job that we may not understand today, but someday hopefully we will. My prayers are with you as always, and rest assured, the fight goes on, the battle goes on.

hi, i am so sorry about what happened. i hadent been on this site for a long time and decided to check when i saw my friend had a cureforjack bracelet on. i cried and i couldnt sleep all night i kept thinking about it. and i was wondering why christina wasnt answering my emails. as i am writing this i am still crying. please christina email me back if you ever want to talk! i will be there!

Thinking of you as always!!
Wish there were more miracle workers like Sandra in Erfurt Germany!! Bless you All!!
Kevin, Dawn, Rhys and Morgan , Welsh, Wales Uk

We love Sandra! What a wonderful story, thank you for sharing it with us. We pray that we will find Conner's donor soon.

Anyone between the ages of 18 and 60, in good health is eligible to join the National Bone Marrow Registry, free of charge, from May 7 – 21. To learn more go to www.marrow.org

Thinking of you all!
Kristin

To Jack's parents and family-
I'm terribly sorry for your loss.
I just watched Jack's story the other day on Mystery Diagnosis on the Discovery Channel. I am from Phila (and a nurse) and out of curiosity I googled his name for more information on the story. I was shocked to find this.
I'm truly sorry for your loss.

Jack,

Just sitting here, thinking about you and missing you as always. I miss your smile and your laugh. I miss you calling my house and asking to talk to Vinnie, James and Ronya.
I just miss everything about you. Everytime I see bubbles, I think of you. I so wish you were still here, but I know you are in a better place, blowing bubbles with Jesus and giving IV's to the angels. Never forget how much I love you!!

Love, forever and ever and always,
Aunt Bubbles

Hi Charlotte, Roy and Christina,
Not a day goes by that we don't think about you. Thanks for sharing the pictures of Christina's birthday and Jack's funeral. They were very touching and we are so glad to be a part of your life, even though we haven't met in person yet. I was really hoping to meet up with you in St. Louis for the conference, but other events have taken priority. Happy Belated Birthday Christina...you look so beautiful and happy! Charlotte, when you are at the conference, please tell Dr. Orange we are very sorry we couldn't meet with him, but would still love to pick his brain very soon!! Also, try to find Dr. Gelfand (he's our immunologist in Denver)and say hi from us...he is one of our favorites!!!
God Bless you all,
Kelly Dunbar

Boubie:

Not a day goes by that I don't think about or miss you ... somedays with a big smile and others with a whole lot of tears.

I know you are shining down on me from Heaven!

Love you,

Cheryl

Hello Hagelin's,

I Just wanted to say hello and wishing that I could meet you all at the IDF conference. Hope you all are doing well and enjoying the summer.

Thinking of you often,
Kelly Dunbar

Just letting you know that I've been thinking of you. I can't wait to hear about the conference last weekend. By the way, I still need your address, I saved a couple of wristbands.

We head to Cincinnati soon, we are excited and nervous - I know you understand.

Sending hugs and prayers...
Kristin

Congratulations Roy for your very well earned promotion. Christopher and Brett send their congratulations, too.
I know that Charlotte and Christina are very proud of you and that Jack is dancing up a storm for you.
Thanks for adding information to the blog. It's good news for everyone to know about. Good luck!

Love Christa and the boys

Hello, I know you don't now me but I work on Fairfield Road. Everyday I pass your sons grave. At first I didn't understand how Jack passed on. But I saw his picture on the tombstone and breifly saw his first name. Since my first time passing and seeing his name every morning I say "Good morning Jack" and every evening when I pass I say "Good Night Jack" I know I sound nuts, believe me I'm not. So today I passed by after having a conversation with my boss and he told me to write down his full name and google it. Well that's how I found your site. My deepest sympathy's to you and your family. He really was a strong little boy. Jack has an amazing story. It really took my breath away. I read it to my WHOLE office. There wasn't a dry eye in site. I just wanted you to know that your sons story touched a lot of people's lives today. His grave site is BEAUTIFUL. The pictures are just gorgeous of the funeral and especially of his life....And again I am sorry for your loss!!!

Roy:

Congratulations on the well-deserved promotion!

I know you will do great ... especially with your "Special Angel" watching over you!

Love,

Cheryl

Hi Charlotte, Roy and Christina,

You were on my mind today and I just wanted to say hi. Hope you are doing well and still enjoying whats left of the summer.

Much Love,
Kelly Dunbar

Hey guys-
Just wanted to say hi and let you know I look at Jack's picture every day on my mirror as I get ready for the day. He is such an inspiration for me!! I hope all is well in the family. Miss you guys. Take care!
Cousin Sarah

Hi Hagelin's,

Sending hugs and love your way. Thinking about you guys often and keeping you in our prayers.

Love Kelly

I have been trying to find your number and I cant if you have my email address give me yours so I can call you.
Letecia Jones

Hello Hagelin's,

Hope you are having a great week together. Just wanted to say hi and let you know that not a day goes by without us thinking of your family and of Jack. Sending many prayers your way---

Much Love,
Kelly Dunbar

Hi you Guys!!!!!
Glad you are all doing ok!!! Thanks for the blog, a difficult thing to do the circumstances given?!! Rhys is doing good, but we just had a bit of a tough week, his bloods are up and down and the Docs have to up and down some of his drugs as some of them slow the white cell process. On the bright side his T cells are kicking in, so it may be time to take him off some of the mycobacterium drugs?? Brave moves will be made.. I guess your tennis is good and the golf handicap is a bit better now you have your Wii thats if you can get on it??
God bless for now and you are never far from our thoughts!!!!!