Let's Find a Cure for Rett Syndrome!
Welcome to the Hope for Henry Team Page. Sunday, April 28th, our team will be run in the Cheshire Road Race Half Marathon, 5K and Kids Fun Run!
We are running to help raise awareness and research funds for Rett Syndome at Texas Children's Hospital. World-renowned neurogeneticist Dr. Huda Zoghbi works at Texas Children's Hospital and has helped discover the mutation that causes Rett Syndrome. Rett Syndrome is a condition caused by a rare genetic mutation, which means most cannot walk, talk or do many things we are all so lucky to do on our own every day. Dr. Zoghbi is working on a treatment and the research being done in her lab has the potential to make a huge difference for those with Rett Syndrome and so many others with genetic disorders and syndromes.
We are running this race in honor of Henry Engel. Henry, the son of Mary and Richard Engel is 4.5-years-old and was diagnosed with Rett Syndrome in 2018. Henry has a unique variation of the condition, which is one that mainly affects girls, and there is currently no cure for Rett. Doctors have told Mary and her husband Richard that Henry will likely need what’s called “total care” for the rest of his life.
Henry is an awesome kid who makes the best of each day and works tirelessly in his physical, occupational, hydro and music therapies. His hard work is paying off. However as time goes on, the side effects of this syndrome become more pronounced. Henry has hip dysplasia, severe sleep apnea that requires use of a bipap machine at night, and takes medication for seizure control. Time is of the essence to slow the progression of this unforgiving syndrome and ensure that Henry (and everyone with Rett) has a healthy future.
Henry does therapy nearly every day in London, where the Engels live, but Henry's main medical care comes from the Texas Children's Hospital, where the Engel's travel to several times a year to see Dr. Zoghbi and many, many other doctors. Dr. Zoghbi and her team are working hard to develop a treatment (using mice with Henry’s exact mutation) and the research being done in her lab has the potential to make a profound life altering difference for Henry and everyone else with Rett.
We are asking for your Sponsorship for the Cheshire Road Race to raise funds for Dr. Zoghbi and the Rett Research she is doing. Any little bit can help and we thank you in advance for your support.
Here are some additional links if you would like to learn more about Henry and the work Dr Zoghbi is doing: