Holly's Fountain of Hope for Rett Syndrome Research
Holly was born in December 2013. She was a healthy, happy baby and seemed to be developing normally. Looking back, Holly’s “army style” crawl - using her forearms to pull herself forward with her belly dragging on the floor - may have been the first sign that her development was delayed. We didn’t think much of it at the time and were excited when she started walking at 20 months. After Holly turned 3 years old, we noticed that her speech was significantly delayed compared to her peers. Our school district evaluated Holly and determined that she had a developmental delay, and she began speech therapy, occupational therapy, and physical therapy. Holly loves going to school and looks forward to riding the school bus!
Still searching for the cause of Holly’s developmental delays, we continued to meet with doctors and through genetic testing learned that Holly has Rett syndrome. Rett syndrome is a rare, non-inherited genetic postnatal disorder, resulting from the random mutation of a single gene on the X chromosome. This mutation interferes with Holly's ability to correctly produce a vital brain protein. Affecting mostly girls, this neurological disease can cause the loss of the ability to speak, walk, and have purposeful hand movements. We were devastated and relieved to finally have a diagnosis. Unfortunately, there is no cure for Rett syndrome…yet.
Research has shown that reintroducing healthy versions of the protein to the brain can reverse symptoms. This has been proven in mice but more research is needed to help children like Holly. A cure for her would actually open the door to curing other neurological disorders like Parkinson’s, Alzheimer’s and Amyotrophic Lateral Sclerosis. As parents, we’ve set up this website to raise awareness about Rett syndrome and raise funds for family empowerment programs and research in hopes of a cure. We’re calling it Holly’s Fountain of Hope because Holly loves water fountains and the word “fountain” is one of the words that Holly says clearly and uses regularly.
Holly continues to amaze us as she makes progress in her therapies. Overall, she is a happy girl who enjoys playing outside, going to the beach or playing in the pool, and eating a wide variety of food. We’d appreciate your help sharing Holly’s story and the links to fund research below.
Holly’s Choice for Hawaiianchipcompany.com
To support Holly and other children as they battle Rett syndrome the Hawaiian Chip Company is donating a portion of all sales to fund research for a cure. Other companies in Hawaii are also pledging to make donations to the research fund from sales of Holly's favorite products distinguishable by a Holly’s Choice sticker. Anyone wishing to help make donations directly to the research fund can do so below. A cure for Holly could help many other families coping with different neurological disorders. Mahalo!
To donate, please visit:
Or purchase any Hawaiian Chip Company product anywhere and a portion of sales will be donated to fund Rett syndrome research.