At 22 months, our dear Maya was diagnosed with Rett Syndrome, a rare, progressive neurological disorder that largely affects girls (and even more rarely, boys). Living with Rett is like having symptoms of cerebral palsy, autism, epilepsy, and Parkinson’s. For many girls, breathing, eating, and sleeping can become difficult, while walking, talking, and purposeful use of their hands may be impossible. Many Rett families live by the motto of “taking day by day”, as you never know what the day – or hour – will bring.
We have had a challenging year, complete with multiple hospital and emergency room visits, the intense onset of seizures (and trialing different anticonvulsants), working with Maya’s anxiety and sensory needs, feeding complications, breathing abnormalities, and the complexities of the Pandemic world. That being said, we are extremely hopeful in the Rett Syndrome research being done. It continues to drive us and think of Maya’s future in a brighter aspect. Rett Syndrome has been shown in a laboratory model to be reversible. Already there are clinical trials for gene therapy happening for girls age 18+ at the end of 2021. We follow the research closely and are impressed by the dedication and urgency to eradicate Rett. These advancements in research continue because of the generous donations made by yourself and others. In honor of Maya’s third birthday (October 8th), and Rett Syndrome Awareness Month (October), please consider contributing to a cure for Maya and her 350,000 Rett sisters/brothers.
Alex, Balint, and Maya
|John Fenwick||$250.00||October 12, 2021|
|Anonymous||$500.00||October 08, 2021|
|Nathan Hickson||$1,000.00||October 08, 2021|