INTRODUCTION
Dear Friends:
I’ve had symptoms of spinal muscular atrophy since I was a baby.
When most children were beginning to walk, my parents noticed
that my head would flop to the floor as I crawled. Doctors said
I had amyotonia congenita and predicted I wouldn’t live past my
8th birthday. When I turned 14, the diagnosis was changed to benign
congenital hypotonia.
It wasn’t until I was leaving for college at age 18 that the
label was changed again, to spinal muscular atrophy. These changes
didn’t reflect anything new in my condition, but a change in the
understanding of the disease called SMA.
This pamphlet is designed to help you better understand the causes,
symptoms and progression of the different forms of SMA. It’s hoped
that this knowledge will help you plan for the future and take
heart in the present, knowing that a diagnosis of SMA doesn’t
preclude leading a full and rewarding life.
Since "officially" learning that I have SMA, I’ve gone
on to earn both bachelor’s and master’s degrees, and now am in
private practice as a licensed mental health counselor. My wife,
Sheryl, and I have two great kids, and I also enjoy such hobbies
as computer technology and music composition (including the publication
of two songs in Nashville).
And I’m in no way an exception to the rule. People with SMA are
involved in all areas of society: the arts, science, law, management,
teaching — you name it. Children with SMA tend to be highly intelligent,
creative and adaptable individuals who contribute much to the
world despite their challenges.
|
|
Jerry Ferro, with his
wife, Sheryl, and children Jacob and Sheri in 1999
|
As you’ll learn from this pamphlet, great progress is being made
in treating SMA and moving toward a cure. Medical, computer and
assistive technologies enable even very young children to compensate
for weak muscles. While some forms of SMA still shorten life span,
new approaches to ventilation and feeding have expanded what’s
possible. And the search for cures is making steady, encouraging
progress.
The Muscular Dystrophy Association is the leading sponsor of
SMA research. The Association also provides a full program of
services for individuals and families coping with SMA, and up-to-date
information about research progress. See "MDA
Is Here to Help You" for more details.
When I was a baby more than half a century ago, the world was
much more discouraging for people with disabilities. Today, medical
science, technology, health care services and laws such as the
Americans With Disabilities Act help us to stretch to reach our
full potential.
If I were to share any words of advice, it would be to let your
own experience, rather than a medical label, determine what your
life’s limitations and potentials are going to be. Build on your
personal strengths, determination and faith — or encourage your
child to do so. And remember that the extended family of MDA is
there to help when needed. You’re not in this alone.
Throughout my life I’ve been called a dreamer, and I’ve found
much joy in fulfilling those dreams. May this also be true for
you and your family.
Jerry Ferro
Casselberry, Fla.
Facts
About Spinal Muscular Atrophy
|
Back to Disease Booklets |