Evan Grube is just over a year old. He was diagnosed with having a rare metabolic disorder called Maple Syrup Urine Disease when he was 7 days old.
Basically, it means Evan’s body cannot metabolize protein the right way and therefore it turns into toxins. The toxins build and can cause irritability, seizures, coma and brain damage. A sick child is hard enough for a parent to handle, but with Evan illness can mean life or death for him. Despite following a very strict diet and feeding regime, monitoring his amino acid levels, frequent medical exams and therapy it’s not enough. Evan still gets sick. Evan’s is sick almost every month with his illnesses lasting 1-2 weeks long. Every time he gets sick it’s another opportunity for toxins to build up in his brain and cause brain damage. Since Evan’s body does not tolerate this disease very well, it was recommended by Evan’s doctors that he have a liver transplant.
With any surgery there are risks, but without a new liver the next illness could be the one that causes irreversible brain damage or even death. We saw this first hand the week before Easter. Evan caught a stomach virus and was unable to keep down his medical formula. He had to be hospitalized. His liver wasn’t working correctly and his immune system was depleted. It took Evan a long time to fight off the virus and for his body to start working properly again. Once home, it took him several more weeks to regain his strength and start getting back to his old self again. With a new liver, Evan’s body will be less prone to illness. He won’t be so susceptible to infections and if he is sick, his body won’t be fighting against him at the same time. He needs this, to grow and thrive, to be a normal child.
The transplant is estimated to cost around $550,000.00. The family’s portion is estimated to be around $50,000.00 for the first 3 months. Evans parents both work full time jobs. They are struggling with the medical co-pays and treatment costs now. They need our help. They need your help. Please consider donating to Evans transplant fund. You will be making a difference in Evan’s life and in the lives of his entire family. Your gift will create a better future for Evan. Any monetary donation you can give will be very appreciated.
God Bless You.
So, Evan has breakthrough CHICKEN POX! He got them from his vaccine. We have been fighting a silent illness for over a week and finally can see now what had been going on for a few weeks inside him. The good news is he's been on the sick diet for over a week and We are finally ahead of this virus and from what his Doctor says, at the end of it. He should be getting back to himself soon.
I wanted to post about our little trip this past weekend. We attended the 2014 MSUD Symposium and it was so amazing! We learned so much at the symposium it's unreal. We met some very helpful people and families and some very strong children and adults with MSUD. We heard some pretty incredible stories about survival and miracles and struggles.
What we learned from it all was that we are incredible blessed to be offered the treatment and cure of MSUD by liver transplant and that we are so incredibly lucky that Evan was diagnosed by the newborn screening. We met children and adults from around the world that are wheelchair bound because they cannot walk, some of them cannot communicate, some have cognitive and developmental delays and disabilities, some of them have learning and behavioral disorders as well as mental health disorders. These people and their families are blessed they still have their loved one. It was the most humbling experience to hear stories from parents that were exactly like ours. We met a couple with two children who were both transplanted as adults and their parents are now advocating transplant for all MSUD children.
We know this is the best choice for Evan. We have a mostly healthy baby who is developing and thriving despite his disease and the constant illnesses he's experienced. We'd like to keep it this way. We'd like for him to keep thriving and not be at such risk anymore. We'd like to not fear for his life all the time at every thing he does, like receiving a simple childhood vaccination. We'd like him to be able to grow and learn and become an independent adult and have a family and children if his own some day. We just want to give him the best possible chance at life. Transplant is that chance. We are one call away from a miracle.
Thank you all for your continued support and God Bless all of You!