Maya is very much a typical teen who loves Meghan Trainor and Taylor Swift. However, in May of 2014, Maya was diagnosed with a rare disease called Atypical TPP1 Deficiency.  Atypical TPP1 Deficiency is a type 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 ~30 other people with Maya's specific type of 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.


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.




Contact us at: bjames358@gmail.com


#FightingForMaya