Welcome to our fundraising page: Hope for Henry
Hello Friends & Family!
We are proud to be running in our local 5K on Sunday April 26th, 2020, raising funds for Hope for Henry and the Texas Children's Hospital on behalf of our dear friend, Henry Engel.
Henry is the 4 year old son of Blaire's very close friend and unofficial 2nd big sister, Mary Engel, and her husband Richard. Henry lives with Rett Syndrome which is a neurological condition caused by a rare genetic mutation of which there is currently no cure. Henry is an incredible child who works tirelessly daily in his physical, occupational, hydro and musical therapies. His hard work is paying off, however as time goes on, the side effects of this syndrome become more pronounced.
While Henry and his family live in London, his main medical care comes from the Texas Children's Hospital in Houston, TX where world-renowned neurogeneticist Dr. Huda Zoghbi, who helped discover the mutation that causes Rett Syndrome, has a lab.
Dr. Zoghbi and her team are using mice with Henry's exact mutation to develop a treatment for Rett. The research being done in her lab has the potential to make a profound life altering difference for Henry and everyone else with Rett currently and in the future.
We are truly grateful for any and all donations and we know Henry is too!
xo
Blaire & Stew
Below are some links if you'd like to learn more about Henry, his amazing family, and the work Dr Zoghbi is doing:
https://www.today.com/video/rett-syndrome-meet-the-doctor-trying-to-create-a-cure-1458677827800
https://www.today.com/parents/richard-engel-why-son-henry-s-rett-syndrome-could-be-t138666
https://www.today.com/health/richard-engel-shares-son-s-battle-rett-syndrome-genetic-disorder-t121898
https://www.today.com/parents/rett-syndrome-richard-engel-son-henry-s-milestone-life-special-t150348
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