Meet Lainey. She was diagnosed with a rare and devastating genetic disease.

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Lainey’s Story

Lainey May Matuska was born on August 19th, 2018. She was beautiful and our hearts were full. She appeared perfectly healthy until the following day when she began to have what appeared to be seizures. 5 1/2 months and countless tests and hospital visits later, Lainey was diagnosed with Alternating Hemiplegia of Childhood.


 Follow Lainey’s journey on Instagram @lifting_up_lainey


There is hope for a cure.

The AAV Gene Therapy Project is the path to a cure for AHC