Thanks to this big internet stuff, I've been able to "meet" many mito families and follow their triumps and struggles in the 2 years since Asa's DX. I've seen several kids struggle and fight and overcome sickness and obstacles that I can't imagine. I've witnessed several whose little bodies have fought until they can't fight anymore and they gain healing and peace in the arms of Jesus. I've learned from the strong parents that I feel a connection with even though we've never met in person.
This week has been pretty hard on several mito kids. I asked the question if this was happening more or am I just aware of it more. Obviously the answer is that I'm more aware. There is struggle and heartache all over the place and we usually just walk around with blinders on, not aware of the hurt that surrounds us. I know Asa's condition is so much more stable than lots of kids but even in our situation, I look at people as they go about their daily lives and I wonder if they realize the blessings they have! Do I realize the blessings I've been given?
First, Eithene has been in the hospital for 10 months straight except for a brief 10 days at home. She has numerous struggles and each time they thing they have a handle on things, something else is thrown off. Her family has had to make many, many decisions that are beyond difficult.
And then sweet Cooper, who I've asked prayers for before, is not doing well. He had a transplant last year and after a long, difficult recovery was doing OK and even took his Make A Wish trip in January. Sadly, he had to have another difficult surgery and mito being mito, he had a hard time afterward. His family is still praying and believing in miracles but many of his specialist believe it is time to just take him home and love on him until the infections take Cooper from his earthly home and he goes home to be with Jesus. The things this boy and his family has overcome are inspiring. I know they wouldn't want to be called that though because they are just doing what you do to keep your sweet boy alive!
And sweet little Zach! He has been a fighter too and this time got hit with a big whammy of infections and his little body needed rest and help. He is in the ICU on a vent and with a chest tube. His is doing some better this morning but is still very, very sick.
These are just a few of our mito friends. And I ask prayer for all the mito kids fighting this horrible disease. It affects each person completely differently and that is a huge part of the problem. And these kids don't fight alone. Each child I've mentioned has awesome parents and siblings. They are loved by grandparents and aunts and uncles. They have touched the lives of the therapist and doctors and nurses who work with them. None of us fight alone!
And when I ask for donations for the Mito-What 5K in Millington or the Energy for Life Walkathon in Nashvile, I do so not only for Asa but more importantly for these kids who so desperately need a treatment or cure! How many more kids will have to fight, and ultimately lose, before there is awareness and treatment?