For Boy With Pompe Disease, Every Active Day Is a Gift

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Story Summary

On Monday evenings, William Lyons breaks into his happy dance, swinging his arms and shouting, “Oh, yeah!” William knows the next day he’ll receive an infusion of what he calls “muscle juice.” It’s the medicine that prepares his 7-year-old body for another week of fishing, looking for crawdads and playing with his family’s pet turtles.

William has Pompe disease, a genetic condition that affects about 1 in 30,000 people. His body lacks the enzyme that breaks down a sugar called glycogen and converts it to muscle-fueling glucose. It is a progressive, fatal disease that weakens muscles — including the heart — and causes developmental delays and problems with swallowing, breathing and walking.

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Kent Faddis
Video Content Manager
MU Health Care
Office: 573-884-0532
Cell: 573-823-9499

Megan Davis
Video Content Producer
MU Health Care
Office: 573-884-0512
Cell: 309-721-9885