Abby Diamond (left) with older sister, Jillian
East Brunswick, New Jersey
When Eric and Robin Diamond brought their second daughter, Abby, home from the hospital, she seemed perfectly healthy. With newborn Abby and two-and-a-half year old Jillian, the Diamonds settled into living the happy suburban life they had always imagined.
It wasn't until Abby was 15 months old that Robin and Eric thought something might be amiss with her development. Abby was not walking or talking, though when the Diamonds brought her to a neurologist, he assured them that her speech would come when she learned to walk. "Everyone believed she would come out of it," explains Robin. However, Abby never began talking, so the Diamonds continued to search for answers. Finally, they were referred to a geneticist who diagnosed Abby with Rett Syndrome just before her third birthday.
Struggling to come to terms with the diagnosis, Robin began extensive research to learn more about Rett Syndrome, which she and Eric had never heard of before. "This disorder is truly awful," she says. "The hopes you have for your daughter's future are significantly changed. You need to revise your expectations," adds Eric. "Rett Syndrome affects the whole family." Jillian, now six, misses normal play with her little sister. "I wish Abby could talk, so I wouldn't be so lonely," she tells her parents.
The Diamonds do their best to make Abby's day-to-day life as full as possible, despite her severe disabilities. Slowly but surely she is learning new, non-verbal ways to express herself. When Abby wants to watch television, she'll bang her hands on the TV. When she is hungry, she'll hang around in the kitchen. She attends public school in a special education pre-school program. A beautiful child, Abby finds joy in familiar routines, and loves school so much that she excitedly walks down the driveway every time a school bus passes the house.
Robin and Eric are practical when it comes to the implications of Dr Bird's research. "You have to be realistic and deal with life as it is, " says Robin, "But looking to the future, these findings do give us hope for Abby and all the other girls with Rett Syndrome."
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