Jillys Page

All About Jilly

Jillian is our oldest child; she has been our pride and joy since the day she was born.  We always knew there was something special about her; but never did we imagine the journey she would take us on.

Jillian, or Jilly as we call her, was diagnosed at a young age – she was just 17 months old.  From the moment we heard the words, “Rett syndrome,” we vowed to do all we could to raise awareness and find a cure.  We promised ourselves that we’d be her voice and we’d provide her with the absolute best life possible.

We have kept that promise to Jilly and today, at age 12, she is a happy young lady who has friends and goes to school.  She is capable of loving and being loved.  She has learned to communicate not only through body language and facial expressions, but she has also learned how to use her My Tobii – a high tech eye gaze device that is her voice.

Jilly is a real trooper.  While she struggles with most of the symptoms that “can” come with Rett syndrome, she maintains a beautiful smile and an occasional giggle – which makes everyone around her extremely happy.

Our family and friends, Jilly’s #1 supporters, are better people because of her.  Our community has been brought together at times to take a stand for her and all those affected by Rett syndrome.  We feel so blessed that so many people love and support her and our cause.

We are sure that there WILL be treatments or a cure for Rett syndrome in Jilly’s lifetime and we won’t stop until that happens. 

Fun Fact About Jilly: Jillian LOVES the rain and wind!

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Support Jilly's fight against Rett syndrome. Donate today in honor of Jilly. All money will go to Rettsyndrome.org to help accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. 

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