Our precious son, Haden, is the most loving, sweet soul. He loves trucks (just like his daddy) and is amazed by his big sister, Alli. Haden goes to Pre-school for half of a day and rotates between his special class and a regular education class. He memorizes things very easily and knows all of his letters, numbers, and colors. Haden is amazing.
With all of Haden’s accomplishments, he still struggles with many physical, intellectual, and developmental challenges. Haden was diagnosed with MeCP2 Duplication Syndrome, which is a rare genetic disorder that causes an array of severe symptoms. Although Haden is doing well now (comparatively) it is unlikely that he will ever talk, dress himself, be without diapers, or live independently without treatment. MeCP2 is also a progressive disorder which means that all the skills he has worked so hard to achieve (like walking at age four) will most likely be lost within a few years.
MeCP2 is also often fatal. Most children never live to adulthood because of complications from the disorder. This syndrome has drastically changed our hopes and dreams for our child. Rather than praying for good friends to love him and for him to grow up and be married with children and a great job, we pray for Haden to live and hopefully have some sort of quality of life.
We still have very high hopes! Dr. Huda Zoghbi and her team at Baylor College of Medicine in Texas, have learned that symptoms of MeCP2 can be improved and even reversed in mice. There are other studies that need to be conducted before clinical trials can begin. Funding is needed to complete these studies. All we need is $700,000. That sounds huge until you realize it could potentially save Haden’s life along with many others.
The ultimate goal of curing MeCP2 is not just a dream. It is feasible and probable. We just hope it happens before it is too late for Haden and other children living with it now.
Please help keep Haden with us as long as possible! Join our efforts to help find the cure. 100% of your donation goes straight to this research.
Thank you so much for any amount you can give!
Byron and Jenni Harper
The Rett Syndrome Research Trust (RSRT) is a 501(c)(3) Nonprofit EIN: 26-0687439
|Roy Perren||$100.00||January 15, 2020|
|Anonymous||$50.00||January 13, 2020|
|ROBERT MURPHY||$2,500.00||December 30, 2019|
|Frances Sparks||$250.00||December 29, 2019|
|Amanda Harper Wagoner||$100.00||December 29, 2019|
|Shanley Young||$100.00||December 28, 2019|
|Shelly Haney||$50.00||December 28, 2019|
|Deborah Fain||$100.00||December 20, 2019|
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|Judy Rogers||$250.00||December 16, 2019|
|Timothy Hunnicutt||$100.00||December 15, 2019|
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|Vic Stephens-Berrong||$100.00||December 14, 2019|
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|Candice Thompson||$500.00||December 13, 2019|