"Bryce Biros----On December 3, 2014 an emergency room visit changed our lives forever. Our 8-year-old son, Bryce's blood test/lab work results came back with news that took our breath away and brought me to my knees. My beautiful, perfect, happy, brilliant baby boy had a rare progressive, degenerative genetic disorder called Ataxia-telangiectasia. My mind raced as I tried to understand what the neurologist was saying. Roughly 500 children in the United States have it. Ataxia-telangiectasia is fatal and there is no cure.
As we learned more about this fatal, awful disease, I sobbed harder then I’ve ever sobbed before. My body ached with pain for my sweet boy. I started reading about A-T and the agony and heartache grew…
“Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer. Children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer’s, Parkinson’s, AIDS, and cancer.” (A Children’s Project)
This is our new reality…our living nightmare. Our happy, brilliant, beautiful boy who brings joy to everyone he encounters will slowly begin to progress through this disease. They tell us he will lose his movement capabilities, his speech will slur, his immune system and pulmonary function will be compromised, and he will be at higher risk to develop leukemia/lymphoma. We have to watch our sweet boy deteriorate until infection, lung failure or cancer takes his young life. Some how, we have to accept that this is our reality. Our poor sweet angel doesn’t deserve this… no child does.
For now, we plan to make every moment count, to focus on the NOW. Right now, Bryce has no idea what lies ahead. Our sweet boy is going to enjoy every second of this life. So every day we wake up, we play, we laugh, we hug, and we enjoy the sunshine and each other. We are so proud to be his parents and are petrified of what lies ahead.
Our goal is to build awareness of this horrendous disease and help fund the research so we can find a cure. We are racing the clock to save Bryce and of course the other children living this horrible nightmare. We want to make sure Bryce has the best life possible and that we enjoy the happiness that he exudes daily. No matter what, we will enjoy each day we are given with our sweet boy!"