Rachel’s Story

Success in small steps.

Our daughter, Rachel, was born 8 weeks early, and in critical medical condition. She required multiple surgeries, a three-month stay in the hospital and a solid amount of luck before she was healthy enough to come home. She was diagnosed with CHARGE Syndrome, a collection of genetic birth defects that affect the ‘mid line’ of her body (Eyes, Ears, Nose, and Throat). To say it was a challenging time would be a gross understatement.

No parent goes into the process of becoming a parent thinking about every possible outcome. We all imagine a happy, healthy baby adding joy to the home. In Rachel’s case, our whole world was shifted in an instant. Every day, we still experience joy with Rachel (and her siblings), but it’s fair to say that with her challenges at birth, it was hard to imagine at the time.

We were fortunate to be in Dane County for Rachel’s birth and subsequent health needs. We had access to not only one of the finest Neonatal Intensive Care Units (NICU) in the United States, a well-respected University Hospital – with its vast numbers of specialists and world-renowned experts , but also an early relationship with UCP of Greater of Dane County (UCP).

It’s that early relationship that was the key to the future. Within days the staff of the NICU were helping us make contacts with UCP’s Birth to 3 Connections program, already making plans for Rachel’s needs after leaving the hospital.

UCP’s Birth to 3 Connections helped us realize we were not alone. Their professionalism and base of knowledge of kids and their development is invaluable. Without their resources, experience, and the staff’s ability to find and implement innovative ideas, surely we (and many, many others) would be left floundering; desperately searching for solutions to problems we didn’t even understand. What a disservice this would be to children.

I’ll never forget those early days, with various therapists and educators from the Birth to 3 Connections program visiting the house for sessions. Every week, the staff would show up with new and interesting ideas and techniques to use with Rachel to maximize her (at the time) limited abilities. Success came in small steps. Today, Rachel has a sense of determination that few people possess.

Fast forward 17 years, and Rachel is now a Junior in High School. She is a member of the High School Choir, the Key Club, and takes a ‘typical’ class load (Algebra/Trigonometry, ASL III, etc.). She was recently selected as prom queen by her peers.

Rachel didn’t get rid of CHARGE, that’s not possible, but through the skills and techniques we started learning within a few weeks of her birth, Rachel learned how to work with and around her disabilities. Today, she is a pleasant, funny, loving, caring individual who has a stake in her future. She’s become a force in her own education, advocating for herself when needed. She has become a professional at using available technology to adapt to her skills and abilities.

It’s sentimental to look back, and I’m sure in my own memories I’d call them the ‘good old days.’ I know in my head, though, that it was terrifying. Having UCP’s Birth to 3 Connections there for support, education and the various therapies was the glue holding everything together. I don’t know what we would have done without UCP.