Boca Raton family shows effects of Rett Syndrome on their daughter while urging more research
2:49 PM, Feb 4, 2014
BOCA RATON, Fla - "She was a very happy baby," said Cari Dasen as she and her husband, Rene, looked at pictures of their daughter when she was an infant.
"A pretty healthy baby," Cari says, describing Camille.
"I have her book, and I look back and every month I was thanking God she was healthy."
At that time, Rett Syndrome was just being recognized as a disorder by researchers.
"One of the key pictures that I have, and I treasure, is the one where she's holding her bottle," she said. "Unfortunately she lost that ability after Rett Syndrome took over," said Cari.
It resulted in Camille regressing. By the time she was two, Camille couldn't control her hands, she wasn't talking or walking. That's when her parents received the diagnosis.
"Knowing that she would never be able to express her needs, tell me if something hurt, it was just unbelievable," said Cari, from her suburban Boca Raton home.
Today Camille is 24-years-old and living with what is described as the most physically disabling form of autism. Rett syndrome often includes seizures, breathing and digestive problems.
"They seem to be trapped in their bodies," said Cari. "She's in there, you can tell by the way she looks at you, but their bodies are not responding to what they want to do."
Rett syndrome strikes one in every ten thousand. Like Camille, many of those with the syndrome will live into adulthood, requiring 24-hours-a-day-care.
"Our life revolves around her in the sense we're taking care of her, making sure she's comfortable, fed and things of that nature," said Rene.
Researchers say Rett syndrome rarely is inherited, but rather strikes spontaneously.
One of the reasons the Dahsens agreed to do this story is to make people aware of the syndrome, and the need for more research.
They're encouraged by the fact that researchers are working on a drug that shows signs of reversing the syndrome in mice carrying models of the disorder. A fundraising polo match for Rett Syndrome research is being held February 15 in Vero Beach.