When Pompe Disease Can’t Stop a Child’s Spirit

Nothing’s better than kids who rock! In my own small social circle, I hear stories about honor roll achievements, Jiu jitsu belt honors, and more. There are some pretty awesome kids out there, who are making the most of their own potential.

And then there’s Luke. He’s a young elementary school boy who tries his best to live a well-adjusted life even while living with the effects of a rare inherited condition called Pompe disease.

Pompe disease happens when the body can’t make a protein that breaks down a complex sugar, called glycogen, for energy. Too much sugar builds up and damages the muscles and organs.

Pompe disease causes muscle weakness and trouble breathing. It mostly affects the liver, heart, and muscles. You might hear Pompe disease called by other names such as GAA deficiency or type II glycogen storage disease (GSD).

Whatever you call it, it’s still a debilitating disease that would challenge any kid—especially if the kid is enduring through treatments and trying to keep his MVP status on the little league baseball team. But, little Luke makes it happen, and you gotta read his story.

Luke is a reminder that it’s great to be young!

Children love to play and would play all day and all week if they had the chance. Playing rejuvenates them and gives them a passion for life. Find time to engage in favorite hobbies or recreational activities. Taking time off pressing issues to engage in fun filled activities is a good way to help recharge the batteries.

Luke reminds us that, “Life can’t be all about work.” After all, what is it they say about all work and no play? When and if we think we can’t do it all and live a balanced life, then we probably should think about the inspiring little boy named Luke.


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