Maya is very much a typical pre-teen who loves Meghan Trainor and Taylor Swift. However, in May of 2014, Maya was diagnosed with a rare disease called Atypical TPP1 Deficiency (aka SCAR7). Atypical TPP1 Deficiency is a subset of Late Infantile Neuronal Ceroid Lipofuscinosis 2 (CLN2), a form of Batten Disease. At the time of her diagnosis, Maya was one of eight reported cases in the world. Since her diagnosis, we have learned of fourteen other people with this disorder.
Patients typically present initially with language delay followed by movement disorders, motor deterioration, dementia, and early death. During the later stages of the diseases, feeding and tending to everyday needs become very difficult. Currently, there is no cure for TPP1 Deficiency or CLN2.
In May of 2016, the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children's Hospital in Houston, Texas announced the commencement of a new research project to explore treatments for Atypical TPP1 Deficiency. To learn more about the Jan and Dan Duncan Neurological Institute at Texas Children's, click here.
This project is dependent upon Maya’s friends and family for funding.
To help fund the research project and to raise awareness about Atypical TPP1 Deficiency we ask that you make a donation directly to Texas Children’s Hospital. You can do so by clicking on this link and giving directly to Texas Children's (http://waystogive.texaschildrens.org/scar7). If you donate from this page, funds go directly to the research project for Atypical TPP1 Deficiency/SCAR7.
We also ask that you order a #fightingformaya T-Shirt. (You can purchase shirts here or sent us and email at firstname.lastname@example.org
Once you receive your shirt, we ask that every Friday you show that you are #fightingformaya, by:
-Wearing your shirt
-Taking a Selfie
-Adding the hashtag, #fightingformaya
-and sharing your pic with the world.
Go crazy, be creative and have fun!!!
Thank you for helping to show Maya and others that you stand with them in the fight to find a treatment and cure for Atypical TPP1 Deficiency.
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