July 21, 2019 changed my life forever. My precious boys Otis and Arlo were born. They were frequently sick but doctors didn’t understand why they were experiencing such high medical complexities as well as why they weren’t reaching milestones. As a single mom, I advocated extremely hard in the medical world to finally get answers to why. In Spring 2022 I received their diagnosis of MECP2 Duplication Syndrome. I was devastated and felt hopeless. By reading the literature on MDS, I also was able to have my little brother Jimmy diagnosed at 32. Unfortunately Jimmy passed from MDS at 33 years old.
I never wish anyone to have to go through what Jimmy had to go through. My sons are happy, curious and gentle. They laugh at silly faces or love tickles. They love playing and exploring. Jimmy was like that too when he was little. But after puberty he had incurable seizures, scoliosis, and 4 bowel obstructions leaving 4 feet of small intestines. All his progress was taken away. This disease progresses and devastatingly takes away a lot of good that once was. I want my boys and all the other brave individuals with MDS to live a life with a longevity of happiness and good health. That’s why I’m creating this campaign. For hope to fund and bring the potential curative treatments like CRISPR or siRNA to trial for MDS. So all people living with the Syndrome can simply live life.
Research on MECP2 Duplication Syndrome (MDS), a severe neurological disorder, is making promising advances. An experiment in the lab of Dr. Huda Zoghbi demonstrated that MDS is reversible in a mouse model. This remarkable discovery has inspired research that is now focused on potential curative therapeutic approaches. Funding is urgently needed to continue this exciting momentum. You can learn more about MDS and the research at CUREMDS.org.
Otis & Arlo's Hero of Happiness
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Otis & Arlo's Wise Warrior
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Otis & Arlo's Compassionate Champion
1 Donor
Otis & Arlo's Sympathetic Supporter
2 Donors
Otis & Arlo's Astounding Advocate
1 Donor
Otis & Arlo's Dedicated Devotee
1 Donor
| Name | Donation Amount | Date |
|---|---|---|
| Nathaniel McLeod | $100 | June 21, 2024 |
| Matt Sturm | $50 | June 15, 2024 |
| Anonymous | $250 | June 09, 2024 |
| Jonathan Gast | $25 | June 07, 2024 |
| Peter Anderson | $100 | June 07, 2024 |