CALGARY- 13-year-old Peyton Fowler doesn’t speak, but she can tell you what’s on her mind.
“She quite a sharp little girl,” Peyton’s mother Tina explains. “She can let you know what’s important in her life or what she wants.”
Peyton uses a tablet to communicate with those around her. It’s one of the ways she has learned to adapt to the challenges caused by the genetic condition, IDIC 15.
“It was first described in 1994,” Dr. Luis Bello-Epinosa, a pediatric epileptologist with the Alberta Children’s Hospital explains. “A group of researchers noticed there was an excess of material on chromosome 15.”
The extra chromosome causes autistic behaviors, seizures and developmental delays. In severe cases it can also bring on sudden death.
“There is no treatment. It is a congenital condition that cannot be changed, but the goal is to improve the quality of life,” says Bello-Epinosa.
IDIC 15 is rare. Peyton is one of just 40 known cases in Canada, but there may be others who have not yet been properly diagnosed. Children are usually first diagnosed with autism, but further genetic testing is needed to discover the extra chromosome.
Once her daughter was properly diagnosed, Tina says they were able to reach out to other families for support.
“Thanks to the group IDIC Canada, we’ve been able to share and talk and find out what challenges they’ve had and share ideas,” she says.
That support proved invaluable during the Fowler’s first years with Peyton’s condition. IDIC 15 is such a rare disease that often doctors knew little about it. Fortunately, things are different today.
“It’s awesome that we now have a clinic in Calgary to teach other physicians about the diagnosis.”
October 15th is IDIC-15 awareness day.
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