Tara is not a typical Rett patient. Starting with the fact that she is 33 years old. She also has quite a different story than many of the more recently diagnosed Rett Syndrome patients. But back in the 80s and 90s not a lot about this disease was known, so in that respect, her story was actually quite normal!
When Tara was 3 years old, she was diagnosed as autistic and after a short stay in intensive care at 4 years of age, her neurologist expected her to regress further, but didn’t really know what else to do. Luckily, this didn’t happen, but she still was not a happy child at all, always screaming and kicking. At 14 years of age her parent decided to see a Rett specialist in San Diego who gave her a Rett Syndrome diagnoses simply by ruling out all other disorders. Two years later, when Baylor’s DNA Diagnostics Laboratory developed the genetic test in 1999, the diagnoses was confirmed. To help with her irritability, her parents decided to put her Risperdal and within three days Tara was a different person, very relaxed and calm. This was a huge relief for the parents.
Even with this ordeal of her childhood and teenage years, Tara has it better than many other Rett patients. She can walk with a limp; she can even feed herself when food is cut up in small pieces. She now lives in a host home, but getting her there was not an easy task. Her dad Troy explains:
One of the biggest challenges of my life was to find and organize a daycare and a home that supports my daughter.
Tara will be celebrating her 33rd birthday soon and although she has slowed down a bit, she is doing ok. During the week she is attending a day program, where they work on her motor skills or do community activities. On weekends she is visiting her family.
Frustrated with the limited resources in the earlier years, the Dertinas have been instrumental in building the Rocky Mountain Rett Association to what it is today. They were also among the group that pushed to create a Rett Clinic here in Denver. For this, we all say, THANK YOU!