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.