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Meet Austin: 2019 Family Advocacy Day Child Champion

Austin is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Austin will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

To describe Austin in word, you would have to say “courageous”. This 12-year-old is currently in middle school and refuses to let anything slow him down.

Austin was diagnosed with limb-girdle muscular dystrophy, a serious, rare and debilitating form of the disease. Unfortunately, Austin’s condition is progressive—it causes muscle wasting, which has led to increases in falls, the use of a wheelchair and his inability to walk upstairs.

Through frequent physical and occupational therapy care at Children's Hospital of Richmond at VCU, his family hopes to maintain his current level of mobility and function for as long as possible. Without his children’s hospital, Austin would not have access to the specialized care he needs. He currently depends on a whole team of pediatric specialists, including neurologists, cardiologists, orthopedists and more.

“Without their knowledge and expertise, we are confident Austin would not have received the quick diagnosis that allowed us to manage his care appropriately,” his mom shares.

While Austin has many staff members he has connected with, he developed a special relationship with his physical therapist, Ms. Alexa. He sees her on a frequent basis and loves how fun their sessions are. Ms. Alexa knows Austin’s abilities and challenges, and she’s able to adapt his appointments based on his level of fatigue that day.

Everyone is quick to point out his infectious smile and positive attitude. Austin is very smart (especially at math) and has a personality that draws people in. He adapts easily and doesn’t let anything stand in the way of his goals. Austin wants to be a Marine just like his father when he grows up. Go, Austin!

Join us in welcoming Austin to 2019 Family Advocacy Day.


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commented 2019-06-01 16:18:42 -0400 · Flag
Austin,
I am so proud of you. Jacob does miss his friendship. Keep conquering your dreams. Thank you in making a difference in so many people’s lives.

Lisa Shuler