With that came some concern, so Brandi and Derek decided to take Boyd in for some testing. Testing took months and little did they know they would soon find out the devastating, CRUSHING diagnosis of their beautiful baby boy!
Boyd will most likely not live to see his 3rd birthday. Boyd has been diagnosed with one of the most rare diseases in the world, so rare that most doctors have never heard of this monstrous disease.
A disease called Leukodystrophy!
It is a neurological disease that destroys myelin, the brains white matter, thus causing the brain to lose it's ability to send signals to the rest of the body. There is no cure for this disease. There is no treatment for this disease. This disease is terminal!
It is stripping away everything Boyd has proudly conquered, such as walking, talking, crawling, and his ability to play like he so desperately wants to. It will soon take away his ability to eat, see, hear, everything. All of the little things that parents take for granted. What we would give to see this amazing, fun loving little guy walk and play again with what he loves most, his trucks, cars, and most importantly his best friend and big sister, Bliss!
We know Boyd is going to die long before he should and we have to watch it happen. No parent or sister should ever, EVER, have to go through what Brandi, Derek, Bliss, and Boyd are going through. Parents aren't supposed to have to say goodbye to their child in such a manner.
There is nothing we can do to save Boyd's life. There is nothing we can do to take Brandi, Derek, and Bliss' pain away. But what we can do is come together and help alleviate the insurmountable medical costs, along with the dreaded expenses of funeral costs. That is the last thing anyone going through a nightmare such as this should have to worry about. The only thing they should be worrying about is spending every second of everyday with what little time they have left with Boyd. All they should have to worry about is loving him and making everyday count.
We need to share their story. We need to bring awareness to this evil, leach of a disease.
So PLEASE share and donate what you can to help this amazing family!!!
ONE SMALL STEP, ONE SMALL ACT WILL CREATE A RIPPLE!
- Amber Miller-Adamany
- Kate & Nikol Brevik
- Cindy Leis
- Ashley Kamla
- Shari Cavadini
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