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Home › Articles › Special Needs › Rett Syndrome

Rett Syndrome

Understanding the Disease

By C.J. Johnson

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Life expectancy averages between 40 to 50 years, but there is no set limit on how many years they will live. Allotting time for a child with RS and caring for other children in the home can be challenging. Because RS is not well known in the medical community, parents must also become experts, often providing information for the doctors and specialists who care for their child.

"Living with Rett syndrome is kind of like being on a roller coaster that never stops," Coughlin says. "It has its ups and downs, the smooth but bumpy course, the twists and turns that somehow seem to come when you least expect them and knock you back into the reality that your child is different from others. But that doesn't mean she can't learn and can't lead a full and impact-filled life."

Although Dani Coughlin died at the young age of 21, her mother feels blessed for the years she had with her. "Never forget for a single moment how precious your child's life is," she says. "It can be gone in a millisecond."

Finding Support
For families who have a child with RS, the International Rett Syndrome Association can be a huge source of support. "We provide help and hope through information, research, family support, advocacy and awareness," Hunter says. "We have annual conferences, local seminars and support groups, a Web site
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