Ben

Fun fact: Loves to wiggle his hips when Latin dancing!

Profile Type:

  • Family

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Age Group:

  • 14-17

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Profile Created: April 28, 2024


Our Story

Ben is 13 years old now, he’s had a childhood full of medical interventions from the day of birth. He loves his life, he has an infectious character and he is loved by all who know him. Ben struggles with communication, he has a PEG feeding tube, he has ADHD and moderate learning disability. Ben has a brother Charlie aged 18 who also has the same syndrome

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Research & Family Meetup

Denver, Colorado, December 4th, 2026. This December, MED13L families will gather in person at the Grand Hyatt Denver. The day brings our community together around the latest MED13L research and the chance to spend real time with one another. Early bird pricing available!