My name is Ashley and my husband, Dave, and I are the proud parents of two little girls: Emmy (11) and Kate (8). Emmy was diagnosed with ataxia-telangiectasia (A-T) shortly after her first birthday. 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 has a devastating disease that would one day leave her unable to walk, talk, or even eat without struggling or needing assistance.
Emmy’s immunologist sat us down and explained to us that not only was it an incredibly rare disease but also that there was no cure or means of slowing it down. Ataxia-telangiectasia is a neurodegenerative disease that causes a progressive loss of muscle control, immune system problems, and a strikingly high rate of cancer. In addition to pages and pages of information about A-T, we also received the name of an organization that is working hard to unite affected families, find life-improving therapies, and fund the much-needed medical research to find a cure for the disease: the A-T Children’s Project.
We spent the following year somewhat in denial of what Emmy’s future would look like. Thinking about our seemingly perfect little girl not being able to run, jump, or play like other kids her age was heartbreaking. If I'm being honest, it’s still a really tough pill to swallow even though it’s been our reality for quite some time now. But we decided in the fall of 2014 that we would do whatever we could to make a difference in her life and the lives of all children affected by A-T. We got in touch with the A-T Children’s Project to start planning our first fundraiser and we haven’t stopped since! Though the organization is small, they are doing BIG things for kids like Emmy.
Emmy is 11 years old and recently finished 5th grade. Unfortunately, she 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 playing with her little sister, splashing around at the pool, and playing with her Squishmallow stuffed animals. I’m pretty sure she could survive solely on chicken nuggets, macaroni and cheese, and chocolate and she’s also a HUGE Disney fan! We attended our first A-T CureTeam event at the 2016 Walt Disney World Marathon Weekend and have gone back every year since. She’s already looking forward to race weekend and so am I! I love running for a good cause and the A-T CureTeam brings me hope that a cure can and will be found for Emmy.