Hi Family and Friends!

Sunday, April 26th, I will be running (along with Tyler and Milly!) in the Cheshire Road Race Half Marathon (my first half since having the kids!)

The three of us are running this race in honor of our friend Henry Engel. Henry, the son of my best friend Mary, is 4 1/2-years-old and was diagnosed with Rett Syndrome in 2018. Rett Syndrome is a condition caused by a rare genetic mutation, which means Henry cannot walk, talk or do many things we are all so lucky to do on our own every day. 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 works tirelessly in his physical, occupational, hydro and music therapies and his efforts have made huge progress his his journey. He is now standing with assistance, can sit for long periods of time, is verbalizing more and working hard to learn how to use an eye gaze communication system! We are so proud of this pioneer and how hard he works.

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 in Houston, TX where world-renowned neurogeneticist Dr. Huda Zoghbi has helped discover the mutation that causes Rett Syndrome. Dr. Zoghbi is working on a treatment and the research being done in her lab has the potential to make a huge difference for Henry and so many with genetic disorders and syndromes.

Mary is my very best friend and an inspiration. Mary is the first person I talk to every morning (after Brandon if he's home.) I roll over, grab my phone and text her, "What's up today? How is Henry? How are you?" Almost the same text every day, but the answer is always different. Some days good, some days more challenging, but Mary never looses her strength and positivity and always instantly responds with my daily update. You see, Mary, Richard and Henry are not just friends, they are our family. There is no better joy than to see Tyler and Henry together laughing and playing when they come to visit us in Cheshire.

I am 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 I thank you in advance for your support for a cause that is so close to our hearts every single day.

Ashley, Tyler and Camille