“I’m running a marathon.” It’s likely you’ve heard this from a friend or two before. It’s a bucket list item for many, an achievement worth celebrating, and something less than one percent of the American population ever accomplish. For Abbey Hauser, running a marathon was about more than crossing the finish line. It was about sharing her story — one of hope, perseverance, and the opportunity to prove something to herself.

Abbey’s story began with a few challenges. Excessive bruising, increased flexibility and a few other symptoms prevented her from walking until after age two. These symptoms were summarized as developmental delays, low muscle tone and other “she’ll grow out of it” conclusions. It wasn’t until she dislocated her knee lying in bed that her physician suggested she see a geneticist. At six years old, Abbey was diagnosed with classical Ehlers-Danlos syndrome, a rare condition that affects connective tissues that provide support to many parts of the body.

For the next ten years, Abbey lived a relatively normal life but was constantly told to stay away from participating in many of the sports she loved. Despite never running competitively and skepticism from her doctors, Abbey joined her high school cross country team after receiving a flyer in the mail the summer before she enrolled. I thought to myself “If you don’t do it, you’ll regret it,” said Hauser.

After running consistently for several years, Abbey’s injuries set her back and forced her to take a break from running. Two years and three surgeries later, she decided to run a half marathon. Abbey went on to run two half marathons, both with the Muscular Dystrophy Association (MDA), in support of children she met while volunteering at their summer camps.

In 2017, Abbey set out to run the Chicago Marathon. When she ran into some setbacks during training, her physical therapist suggested she use forearm crutches to help, which it did. As life would have it, race day started off on the wrong foot. Not only was it 80 degrees, but Abbey accidentally checked her bag and forgot her medication. Her will and determination led her to mile 22 where she was forced to drop out of the race.

It was my limit for that one day, but not my limit forever. Not possible that day, but possible. – Abbey Hauser

One year later, Abbey was back at the starting line of the Chicago Marathon to finish what she started, this time with a registered guide, medication and the willful spirit that she seems to always carry with her. Seven and a half hours later, Abbey crossed the finish line.

Abbey accomplished something most people never attempt and impacted a community by not allowing Ehlers-Danlos syndrome to define her. Her time spent volunteering with MDA helped her accept her own disability, and come to the realization that for others to understand these challenges, they have to be exposed to them – or in Abbey’s case show them what you can do.

Aside from her inspiring accomplishments as an athlete, Abbey acts as a voice for the rare disease community through her blog, Owning My Story, where she helps other rare disease advocates tell their story. In 2018 she spoke in front of Minnesota congress where she advocated for the creation of a “Rare Disease Advisory Council” at the University of Minnesota. Recently, Hauser was awarded a grant from the Challenged Athletes Foundation, as she continues to explore adaptive sports. In the midst of her advocacy and accomplishments, Abbey also graduated from the University of Minnesota. This fall she will attend the University of Kentucky to study biomechanics and will also work in their Health & Wellness program utilizing her skills as a certified personal trainer.

Abbey is a 2019 RARE Champion of Hope Award nominee. View the Full List of Awardees.

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