Emmy is 12 years old and is in 6th grade. Shortly after her first birthday, she was diagnosed with a rare disease called ataxia-telangiectasia (A-T). Her diagnosis came as a complete shock to us; we had been doing testing to figure out why her immune system was lacking and ended up finding out that she had a devastating disease that would one day leave her unable to walk, talk, or even eat without struggling or needing assistance.

Unfortunately, Emmy is no longer able to walk on her own and she struggles with basic tasks like getting dressed, using silverware and writing tools, and even projecting her voice loudly and clearly. She requires the help of a one-on-one aide at school each day and relies heavily on those around her to help with nearly all daily tasks. But A-T doesn’t define Emmy! Emmy may be soft-spoken but she is equally big-hearted. She loves traveling, splashing around at the pool, collecting Pokemon cards, all things capybara and we’re pretty sure she could survive solely on Chick-fil-a nuggets, donuts, and chocolate if we let her.