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Wednesday, July 25, 2012

World RTS Day

World RTS Day aims to honor those with disorder, raise awareness
Originally published July 03, 2012

By Katie Crowe
News-Post Staff

World RTS Day aims to honor those with disorder, raise awareness

Photo by Graham Cullen

Gabe Cameron, 35, who has Rubenstein-Taybi syndrome, sits with his mother Terri outside the family's Frederick home.

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, 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 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?'"

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