Family: Support: Share Your Story: Janet
 Hello.
My name is Janet. I live in Columbia, MD. My son Scott was born
with Crouzon's Syndrome in 1984. Scott had a severe form of Crouzon's,
so he required early and frequent surgeries. In his 15 years, he
has had 18 operations; 6 took place in the first nine months. Like
many patients with Crouzon's, Scott had very small airways and needed
to be tube fed. He had a craniectomy at 4 weeks to remove much of
the malformed bone and allow for normal brain growth. He developed
hydrocephalus and had a VP shunt which has been revised several
times. He needed eye muscle surgery to correct strabismus and had
ear tubes to prevent fluid in his middle ear. He has had several
subsequent surgeries to reconstruct his facial bones.
Life was extremely difficult for the first year or two after Scott's
birth but has gotten progressively easier and more "normal" since.
While Scott has some learning disabilities and has some gross motor
and fine motor deficits, he has come a long way and overcome many
obstacles. He has done well in academics and will start high school
next year. He loves sports. Although he usually has to work twice
as hard as others without his challenges, he has been able to "stay
in the game" with hard work and determination. He has played ice
hockey for 10 years since he was four and has earned a black belt
in Tae Kwon Do. He loves to ride bikes and go camping. Most of all
he loves to play with his friends. Like all kids with facial differences,
he has had to learn to deal with teasing. Scott usually copes by
ignoring the comments and saying something like, "Yea, I know I
look different. I have Crouzon's Syndrome. So do you guys want to
ride bikes or not?"
Scott and his sister Kelly are incredible individuals for the way
they have each coped with the challenges they have faced because
of Scott's Crouzon's Syndrome. Scott is a perpetually positive kid
for whom the glass is always half full. In spite of all he has had
to tolerate, he always sees the bright side. I sincerely believe
that this positive attitude is the secret to his success. Kelly
has always been loving and protective of Scott even when she was
getting the short end of her parents' attention. She showed a remarkable
ability to understand our need to attend to Scott's needs, at times
to the exclusion of hers. They have become very close friends as
well as siblings.
We have had many difficult days and many happy times on this roller
coaster ride that began the day Scott was born. I feel very fortunate
to be where we are. We would never had fared as well as we did without
the extraordinary support of our families, friends and medical providers.
The emotional support and assistance they provided have been critical
in making our lives tolerable.
By Janet Ayres
August 1999
Last Updated:
6/14/02
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