Meet Claire

Our daughter Claire was born blind and deaf and having so many seizures that she will always be mentally like a newborn. She has CP, is quadriplegic, and has a mitochondrial disease. The first two years of her life she cried 22 hours a day, and was in the hospital about every other month for testing or illness. After working with neurology, we were finally able to get her some medication that lessened her seizures and pain, and at around 8 years old we found the best mix of medications to decrease her crying substantially. 

To say that we can’t just get a regular babysitter for Claire is an understatement. In her 12 years of life before Crescent Cove, we only left her one night overnight (when we were able to visit my sister who is a nurse in VA). We have and have had PCAs to watch Claire, but they can’t watch her for extended periods, and also don’t know how to deal with Claire’s many medications and machines.

Our palliative team told us about Crescent Cove, and it has been a wonderful respite for Claire and for us. I was impressed at our first visit when I didn’t have to explain what Claire’s various machines were or how to use them. The staff is very thorough and also very compassionate in their care of Claire, and keep us informed every day. We have been able to spend quality time with our other daughter Gwen, and Jon and I even got away for a few nights for our 20th anniversary last year! We are very grateful to have the opportunity for extended quality care for Claire at Crescent Cove.

Katherine, Jon, Gwen and Claire

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