My Story!

Hayden is an exceptionally bright and engaging boy who has already battled more obstacles than many of us have to deal with in a lifetime. At only 8 months of age, Hayden was diagnosed with a devastating neuromuscular disease called Spinal Muscular Atrophy (SMA), Type I/II. At the time of Hayden's diagnosis, we were given the grim prognosis that Hayden would likely die before age two. Very thankfully, he's beating those odds.

SMA destroys motor neurons, the nerves that control the body's muscles. With the loss of the motor neurons, the spinal cord is unable to deliver signals to otherwise healthy muscles and, in turn, the muscles weaken and atrophy. Because of SMA, Hayden never rolled, crawled or walked. With only 10% the muscle mass of an average child his age, Hayden is unable to walk and cannot sit unsupported. He cannot hold his head up or use his hands to play independently.

By means of a specialized power wheelchair, Hayden is able to sit supported and enjoy some mobility. Watch for his license plate, which reads "Rock 'N Roll".

Because of SMA, Hayden's swallowing is also affected, such that he receives most of his nutrition through a feeding tube (G-tube) that goes directly into his stomach. And most critically of all, Hayden's breathing is affected and he must use a bi-pap machine to help him breathe when he sleeps and in times of illness and fatigue.

On a daily basis, Hayden seems unaffected emotionally by his condition. He is a wise soul and seems to simply accept himself for who he is. Our hope is always that others may do the same of him. Take away the physical obstacles, the wheelchair, the braces and you have a little boy who is passionate about life, his collections of dinosaurs, cars and trucks, and music and loves his family beyond words.

Although Hayden's body may be weak, his spirit and courage are undeniably strong.

Hayden is our eldest of two children. His younger sister, Lauren, age two and a half, is unaffected by SMA. Hayden is a wonderful big brother and loves to be with Lauren, watching her play and "marching" around with her in his wheelchair. Lauren is a feisty, strong-willed girl, almost out of necessity. From day one, she had to hit the ground running. Both children are beyond their years for what they have already experienced and seen at their tender ages.

We have lovingly devoted ourselves to the our children. We take this all one day at a time, knowing each day is a true blessing. Hayden is our little professor, teaching us each day what is important in life. In five short years, we have learned so very much.


 Written by our mom, Tina