Family: Support: Share Your Story
The following stories have been previously published or have been
authored just for this Web site.
By publishing them here we hope that you can learn from them as
well as take a sense of hope with you.
If you or a friend have something to share please let us know.
We would love to be able to share your stories with other parents
and families. We believe that in a way, the published word can help
spread confidence, hope and goodwill among others who share similar
experiences.
If you would like to contribute a story or ideas for a new column
please send us an email at: ejabs1@jhem.jhmi.edu.
We will be in touch with you as soon as possible to talk further
about publishing your experiences, so that others might benefit
from your experiences.
Thanks again, and thanks to all who have already contributed!
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Scott Summe has been selected to represent Johns Hopkins
Children's Center during Children's Miracle Network broadcast.
Read
the Hopkins Article
Read
the Sun Article
About one in every 50,000 children has Crouzon syndrome,
and Scott Summe knows what that means.
A sporadic mutation in a gene required for development prevented
Scott's head and face from forming properly. Instead, the
sutures in his head closed....
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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 ...
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Before everything in her world changed, Joan Richtsmeier
had been listening raptly to a speaker in a stately auditorium
at the University of Chicago. It was the summer of 1994 and
the finest minds in the field of vertebrate structure had
come from all over the world to attend the conference. Richtsmeier,
who had been invited to lead a workshop, was elated. At the
workshop she planned to unveil to her international colleagues
a new technique for...
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Little more than four years ago, Hopkins
geneticist Ethylin Jabs was called in to Franklin Square Hospital
to diagnose Erin Williams, then two days old. In an hour long
examination, Jabs measured the infant's face, peered into
her ears, and took the family's medical history. But she knew
in the first few minutes, by the gnarled ears, small jaw and
cheekbones, and defects of the lower eyelids (the eyes did
not fully close), that Erin had Treacher Collins syndrome.
A genetic disorder characterized by...
Read
a Related Article
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Brett was now two days shy of nine months. Still being breastfed,
mom woke him up at 3 a.m. to feed him since he could not have
any breastmilk for four hours before surgery. We arrived at
Medical City Dallas hospital around 6 a.m. to check-in and
to get Brett prepped for surgery. That morning, Brett was
in such a happy mood. It broke our hearts that soon he would
be taken away from us and he had no idea what was about to
happen....
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David was born in 1988 and was diagnosed with PRS (Pierre
Robin Syndrome) within minutes of delivery. He was intubated
in the delivery room and flown to a NICU 125 miles from home.
His breathing issues were quite severe, so a trach was placed
when he was three days old. He was fed via NG tube in the
NICU for five weeks. We found a sippy cup, after many trial
and errors, and we had to alter it to make it work....
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Last Updated:
2/20/06
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