World RTS Day aims to honor those with disorder, raise awareness
Originally published July 03, 2012
By Katie Crowe
News-Post Staff
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Photo by Graham Cullen
Gabe Cameron, 35, who has Rubenstein-Taybi syndrome, sits with his mother Terri outside the family's Frederick home.
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According to
Frederick
resident Terri Cameron, simply "knowing" allows parents of children
with disabilities to deal with any challenges that may arise. "Knowing gives you strength to move on and do what is best for your child," she said.
Cameron
and her husband, Billy Cameron, are the parents of 35-year-old Gabe
Cameron, who has Rubenstein-Taybi syndrome, a rare genetic disorder for
which there is no specific treatment. Gabe was born with RTS but it was
not diagnosed until he was an adolescent.
Those with RTS do share
some similar facial and other features, such as broad thumbs and toes,
and the disease is also associated with mental disability. The degree of
disability, as well as other medical issues, however, varies with each
individual.
Gabe is pretty healthy on a day-to-day basis, his
mother said. He is mentally delayed and has experienced medical
problems, including almost complete vision loss, mild hearing loss and
seizures, and he takes medication for gastrointestinal reflux. Over the
years, it has also become a bit harder for him to communicate, Terri
Cameron said. Many of the medical problems Gabe has are commonly
associated with RTS.
Following his diagnosis, Gabe's parents
placed him in early intervention programs, Terri Cameron said. For about
30 years, The Arc of
Frederick
County has provided Gabe and his family with care from residential
coaches and skills educators, as well as those who provide respite for
the family.
In 1998, Gabe graduated from
Walkersville
High School with a certificate of attendance and also had some
vocational training prior to graduation, Terri Cameron said. Since 2000,
due to his medical issues, Gabe has been at home but goes out every
week with his caregivers and family to the fitness gym at
Frederick Memorial Hospital, to the mall, out for lunch and other activities.
Off
and on for about 10 years, Terri Cameron has been active on an email
listserv on rubenstein-taybi.org, a website devoted to those diagnosed
with the disease and their families. Individuals living all around the
world interact via the listserv, sharing experiences, suggestions of
where to research or simply providing support to one another.
In
May, a parent of a child with RTS living in Australia proposed the idea
of creating a World RTS Day to all family members active on the
listserve, Terri Cameron said. The idea behind establishing one
particular day to be devoted to RTS was to unite to celebrate those
diagnosed with RTS, raise awareness and pay tribute to Dr. Jack H.
Rubenstein, who along with Dr. Hooshang Taybi, first reported on the
disease in 1963. The Australian parent proposed July 3 as being the
first World RTS Day, since that is the date when Rubenstein died in
2006.
After getting a great response from RTS families around the
world, the parent created worldrtsday.org and encouraged families to
upload content to the site, including photographs, articles and other
information about RTS. According to the Camerons, World RTS Day is about
making RTS a well-known disorder to families and doctors alike.
"It's
important to get the word out because many times a child and their
parents go through many years in the dark about what to expect of their
child or how to best help them learn and succeed," she said.
"When
you know these things, you can move on and stop the wondering. They can
begin appropriate testing for frequently occurring medical issues, or
schooling for your child with the confidence that other children with
RTS have learned basic skills and your child can, too," she added.
"I
know (the parents') responses can't take the place of medical advice,
but their experience sometimes outweighs the doctors' lack of concrete
experience living day-to-day with our children," said Terri Cameron
said.
Despite the challenges that may come with having a child
with RTS, the Camerons said they have never looked at it as being
something negative, Billy Cameron said.
"You're never going to gain anything from being upset about it," he said.
"Since Gabe was born, not once have we thought, 'Why us?'"
http://www.fredericknewspost.com/sections/art_life/display.htm?StoryID=137725
