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The Top Ten
Things You Should Know About Fragile X-Associated
Tremor/Ataxia Syndrome (FXTAS)
One Day in
the Storm of Life - I seldom focus on the negative but
when life happens it’s not always positive. It was August 30,
the first day of school for the girls, a time of celebration. We
started preparing for this day two weeks ahead of time. I
thought the morning would be smooth as silk but then the FX (Fragile
X) fairy visited during the night.
Fragile What? -
Although Fragile X Syndrome is the most common known cause of inherited
cognitive impairment, the up-to-date name for mental retardation, the
average person has not heard of Fragile X Syndrome. The average health
professional has very little knowledge, or dated knowledge, of Fragile X
Syndrome. Until our children were diagnosed, we were average people asking,
“Fragile what?”
The
Top Ten Things You Should Know About Fragile X Syndrome
Grief Can be a Gift
- With the dog days of summer upon us, I was sitting at this
silly computer trying to find the direction for a column. My mind
wandered far from summer to a personal experience. It's a unique
experience that only a parent of a child with a disability can
understand: the grief that one experiences with a diagnosis of a
disability.
X-tra Special Advice:
Cooking for a Cause - Shortly after
Andrew’s diagnosis, our free time began shifting focus. Slowly, it was
spent less on leisure and more in the “special needs” world, such as
writing this column. National Fragile X Research Day was celebrated on
October 5. In honor of the day, there are many Fall Fling fundraisers
being held all around the country with one thing in common – proceeds
going to FRAXA Research Foundation to help find a cure for Fragile X
Syndrome.
Fragile X: The
Story of Luke - Shutdown of one gene
changes a little boy's trip through life.
When Luke Solotaroff was a month old, he still did not have the muscle
strength to suck his mother's breast or a bottle. His parents had to
use a tiny tube, one-tenth of an inch in diameter, to coax sustenance
into his baby mouth. By the time Luke was 2 1/2 years old, the
situation was no better. His legs were so flexible they could be tied
behind his head. He was also developing distinctive features: large,
protruding ears and an oval face. And while he laughed and screeched,
he didn't form any words.
Discovering
Fragile X Syndrome:
Family experiences and
perceptions;
Human Touch: Jake
Porter’s emotional story has gripped the Southern Ohio region.
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