Rebecca's Story

Rebecca, is 5 1/2 years old, she will be 6 in August. She is labeled with Infantile Refsums Disease. This very rare syndrome is typically deaf/blind. She is diagnosed with RP and moderate hearing loss in both ears. She wears hearing aids in both ears and tests at conversational level. She attends the WPSBC (Western Pennsylvania School for Blind Children) in Pittsburgh, she is enrolled in Kindergarten. They are working mildly on sign language, but her vocal abilities have greatly improved over this last year. She has about 30 + words in her list, which is a major improvement since I first joined the listserv a year ago.

She has recently been diagnosed with seizures, so she is now wearing a safety helmet (bright pink). She is very mobile, runs as well as walks everywhere. She especially like the outdoors. She's happy just to be out on the porch in the rain, as long as she is out. She refuses to wear gloves, so the snow weather/play is non-existant. As soon as her hands hit the snow, she is ready to come in. She has a younger sister who she terrorizes. We have behavior problems with her, so after alot of searching (about 3 years) I have finally found EPSDT services that start this coming week. This will be very interesting, and helpful.

Written in March 1998 by Jean Weaver