Maya is very much a typical thirteen-year-old who loves Meghan Trainor and Taylor Swift. However, in May of 2014, Maya was diagnosed with a rare neurodegenerative condition — a form of Batten disease called atypical TPP1 deficiency (aka SCAR7). As Josh Baxt writes in his article How to Survive a Rare Disease, "The word 'rare' hardly does it justice: ultra rare, hyper rare, twenty-people-in-the-entire-world rare?"
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 SCAR7. This project is dependent upon Maya’s friends and family for funding. There are three ways that you can help fund the research project at Texas Children's Hospital and raise awareness of SCAR7 and other rare disorders. The first is by purchasing a #FightingForMaya T-Shirt and the second is by donating directly to the SCAR7 research project at Texas Children's Hospital. The third way is to purchase an item from Maya's Collection The Good Fight in the Aquanauts Store:
the good fight
100% of proceeds from purchase of any items in The Good Fight Collection goes to #FightingForMaya. Maya personally selected the photos for the items in this collection. To learn more about Maya and the rare disease she is battling so courageously, please go to #FightingForMaya.
Explore The Good Fight collection in our store to find your favorite pieces.