Starting a family was not easy for us. IVF gave us the child we were hoping for, but that joy quickly turned to fear when Holden was born prematurely and had to spend time in intensive care. We noticed developmental delays upon coming home, but believed it was related to his premature birth. It wasn’t until our second son Elliott began missing milestones that we learned both of our boys have an incredibly rare genetic disorder: MECP2 Duplication Syndrome (MDS).
Not only can MDS severely impact intellectual ability, it is often fatal. Although our boys are currently doing well, it is unlikely they will ever talk, dress themselves or live independently. Even worse, MDS is a progressive disease so our boys might lose the skills we’ve worked so hard to gain. The fear is overwhelming. Will our boys continue to be happy? Will they develop seizures? Will they lose the ability to walk? What happens to them when we’re gone?
But there is hope! Dr. Huda Zoghbi, a research scientist at Baylor College of Medicine, has shown that symptoms can be improved and the disease can be reversed in mice. Funding is needed for proof-of-concept studies before clinical trials can begin with the ultimate goal of finding a treatment and cure.
The MECP2 community needs $1.3M to fund the first two projects. (More about those projects can be found here).
Join our community. Help us develop a cure for our boys and others who are struggling with this disorder. 100% of your contribution will go to this effort.
With Love and Thanks,
Stephen, Andrea, Holden & Elliott
Holden & Eliiott's Hero
Holden & Eliiott's Star
Holden & Eliiott's Champion
Holden & Eliiott's Supporter
Holden & Eliiott's Advocate
|Karen Warmkessel||$100.00||December 06, 2019|
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|Seymour Lozinsky||$500.00||November 27, 2019|
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|Anonymous||$1,000.00||November 27, 2019|