Limitless Levi

Limitless Levi Levi's journey through life with Pompe Disease 💚💙

Last night was Levi's first sleep study! He was so patient waiting to get all hooked up and ready. ✨💚💙
02/05/2026

Last night was Levi's first sleep study!
He was so patient waiting to get all hooked up and ready. ✨💚💙

Muscle juice days are getting trickier the more we have. Levi is understanding what is going to happen and starting to a...
01/28/2026

Muscle juice days are getting trickier the more we have. Levi is understanding what is going to happen and starting to ask why and saying he doesn't want it.

One thing that makes it easier is our medical play set from Grant’s Giants Pompe Awareness Nonprofit. It makes the process easier and less scary having his dinosaur friend to go through it with him. Every infusion and even on random days we go through the process of setting up Mr. Dinosaur with his muscle juice.

Between infusions, therapies, specialist appointments and everything in between; this life is not easy. But there are supports out there to help us through it. There is an incredible community that is always there to lift us up when we need it. 💚💙

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