Holly's Fountain of Hope for Rett Syndrome Research

Holly's Fountain of Hope for Rett Syndrome Research

Holly’s Fountain of Hope

Join Holly on her quest to fund Rett syndrome research. This research could unlock the door to helping other neurological disorders like Alzhiemer’s, Parkinson’s, and Autism.

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 so excited when she started walking at 20 months. After Holly turned 3, 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. She 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 she has Rett syndrome. Rett syndrome is a rare postnatal disorder, resulting from the random mutation of a single gene on the X chromosome. This mutation interferes with her ability to correctly produce a vital brain protein. Affecting mostly girls, this neurological disease can cause them to lose their 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 that protein to the brain can reverse symptoms. This has been proven in mice but more research is needed to help girls 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 research in hopes for a cure. We’re calling it Holly’s Fountain of Hope because “fountain” is one of the few words Holly happily uses correctly.

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 Sticker for Rett Syndrome Research

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 at hollysfountain.org. A cure for Holly could help many other families coping with different neurological disorders. Mahalo!

Holly Having Fun!

Donate To Help

To donate, please visit:

www.rettsyndrome.org/make-a-difference/donate

Or purchase any of the products below with the Holly's Choice sticker and a portion of those proceeds will be donated for research.