Cure 4 Jack

It is very frustrating for me to read what is going on and sit here and be quiet. I don't think anyone can ever understand what this feeling is. I know each and everyone of you have suffered from the emotional rollercoaster to finding out about the NEMO diagnosis and the realization of what NEMO is all about. Still yet, there is so much information that needs to be found and WE as family members who suffer from the rare condition can truly only rely on each other for life experiences to getting what our children need.

I have also realized that there are more families who have been diagnosed and honestly I am very envious of all of you who have made contact with these families. I have a feeling that these new families are hesitant on contacting us because we lost our Hero. What can I do or say to make everyone understand that even though we are mourning Jack, we are here for each and every one of the NEMO families. Roy and I have so much information to share and by sharing this information we are keeping Jack alive. We have a lot of work to do. We are trying our best to get our heads together and work at launching the foundation to be able to be an informative and supportive place for ALL the NEMO families to gather and not feel alone.

Every NEMO mutation is different from the next and each child is affected differently. The only common denominator is the diagnosis. I am reading and listening to all the families and I try not to compare what Jack experienced, but I can compare the emotional sufferings of being a parent. I am an advocate for the patient. The doctors are there to use their knowledge to do everything possible to keep our children comfortable and relieve them from any of the medical issues surrounding the affects of their mutation BUT we are still the parent. Those are our children sitting in the hospital beds. Yes, we don't have the medical background, but we know our children. We have to ability to express what we feel and truthfully we have the ability to tell the doctors those feelings. There were many times when I didn't like the course of treatment or what was happening and I let the medical staff know and I was usually right. I kept my son alive by staying on top of the doctors and questioning every little thing. Yes, I didn't know medically what was going on, but I asked questions upon questions and didn't move forward on anything until I understood. Granted if Jack was in any kind of life threatening circumstance I wouldn't dilly dally on understanding and I left it to the professionals.

This diagnosis is such unchartered terrirtory and not one doctor knows enough, they still have to rely on each other to express their experiences of each patient to learn from. Just because everyone seems to be going to the same place doesn't mean that is the place to be. Just because the hospital Jack was in, only had Jack as a NEMO patient doesn't mean that they are not qualified to take care of your child. I have found that there are many competant facilites throughout the US that can be beneficial to your child, but guess what, NOT one facility is flying on their own. Each doctor at different facilities are working with other doctors all over the world. No one is flying this diagnosis without working with another doctor. You can be rest assured that you child will be taken care of where ever you are because the doctors are working together all around the world. And, if your doctor doesn't know you have the right to contact as many doctors as you wish and continue to ask questions until you find the answer. The most competant doctor is the one who says they want to consult with another doctor to find the answer. In Jack's case Dr. Bunin (BMT specialist), one of the most respected transplant doctors in this country, sent Jack's biopsy slides to Seatle, WA to confirm the GVHD in his gut. How can you not respect a doctor who clearly admits that they aren't sure and want another opinion for themselves. To me, a doctor who searches and admits to not knowing everything is a doctor who looks beyond themselves for the answers.

I know I rave on our saviour, Dr. Orange, but he is the one doing the research, going to countries all over the world and educating more doctors on what has been found to date and I am hoping that one day doctors will work together to help us do something to keep children from suffereing the way our Jack did. Just remember one thing, Jack was cured. At his death he had a working NEMO. I am a believer in "when it's your time" and I can honetly say, it was Jack's time. He was sent here for us to learn about NEMO and continue to be able to help more children diagnosed. Roy and I are selfish and would do anything to bring our son back, but unfortunately we know it is impossible, but we can work at making a difference for other NEMO families and that is our goal.

God Bless all the NEMO families and please pray for all of them. Our friend Conner is undergoing his conditioning for his transplant which will take place in 8 days, Jacob is doing much better in the hospital and Dr. Putnam is performing a scope today. Dr. Putnam was Jack's doctor who made a difference in the turning point of getting his diagnosis. Simon is doing well and his counts seem to be holding. Giovanni's transplant is also holding strong. Samuel and Rhys are awaiting transplant and our pal Andy is the poster boy for success. The Trevino family is incredible and have gone through so much and their efforts are holding strong.

We are here for each and everyone of you and we hope that one day we can all work together and be a team for more families. To those of you who have contact with the families who we don't know about, please forward this to them. We want to let everyone know we are here.