Tag: Mosaic Trisomy 18

A Testimonial from Jill Houpt about Ellie

Eleanor “Ellie” Houpt
Mosaic Trisomy 18 (Edwards Syndrome)

“Ellie was diagnosed with Trisomy 18 when she was five days old, and we were told at that time to expect severe, if not profound, developmental disability. We contacted First Step and received prompt, personal, step-by-step assistance in enrolling Ellie in early intervention, physical therapy, occupational therapy, and speech therapy at First Step in Hot Springs. She began receiving services at 3 months old, and we have been thrilled with every aspect of our time there! Ellie began full-time preschool at 18 months and graduated to Kindergarten in August 2010. Instead of sending her to public school, we were able to enroll her in the young school-age program at First Step, which provides an alternative educational setting for children who are unable to attend public school due to their disabilities. If Ellie had attended public school, she would have required full-time, one-on-one support from an aide to ensure her physical safety and sign-language interpretation to allow her to communicate. Thanks to the First Step School-Age program, I am able to concentrate on my full-time job during the day, because I know that Ellie is safe and happy in the caring, capable hands of the First Step staff.

When Ellie was diagnosed, we were told that she may never walk or talk, be able to care for herself or toilet train, and that she may never be able to communicate. Through many years of physical therapy, speech therapy, and occupational therapy, as well as special education in the classroom, Ellie has conquered most of these goals and continues to progress every day. I sincerely believe that the people of First Step do not simply go to work every day, but that they genuinely have love in their hearts for every child they treat.

Ellie has made remarkable progress far beyond what is expected for her condition for the following two reasons: 1) Ellie is a remarkable child, and 2) the support and encouragement she received from her teachers and therapists (and family) during her five years at First Step. Raising a child is never easy. Raising a child with a disabling condition is downright hard. First Step has consistently provided caring support that has enabled us not only to cope with disability, but to thrive in spite of it!”