Meet Halle: 2019 Family Advocacy Day Child Champion

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

Halle likes to be cuddled, sit on the couch, and listen to her grandfather—Pops—play the piano. While she finds an incredible amount of joy in life, this 9-year-old faces many challenges every day just to survive and thrive as best as she can.

Halle was diagnosed with an extremely rare genetic change that affects the calcium channels. This rare condition causes developmental delays, hearing loss, seizures, stroke and other difficulties. Every day, Halle has to work hard just to breath, swallow and sit up.

Halle is the only person in the world with her exact genetic change. Even though she has many appointments with her doctors, specialists and therapists at Prisma Health Children’s Hospital, Halle remains positive about her condition.

“Without children's hospital, we would feel lost because her illness is very complex and they taught us how to care for her as a medically-complex child,” her parents share.

With her major developmental delays, progress is measured in small wins: seizures more controlled, weight gained, eye contact improved. Halle loves to be around her two brothers and is surrounded by people who adore her.

Join us to welcome Halle to 2019 Family Advocacy Day!

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