Limitless Levi

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 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. 💚💙

Something tells me Levi is ready for spooky season... It's a potion mixing Monday in his standing frame today! ✨🧪💚💙

Levi is very determined to walk and run with his friends, this is part of the work we are doing to help him reach that goal! 💪🏻❤️

Saturday afternoon infusion today.. number 54! I'm not sure how it's possible we are up to 54 already.
This journey feels like it started yesterday but also feels like it's been a million years.
So grateful that we are able to have these infusions to keep our little guy living life to it's fullest!

💚💙💚💙

T'was the night before early morning infusion and not a creature was stirring... Except this mama setting us up for what we hope to be an easy day!

It has been 2 years of Levi being on Enzyme Replacement Therapy. It's crazy to think of where we were then and seeing all that he is capable of now. Oh and this is just the beginning!
I can't wait to see all the wonderful things he will do in this life. 💖

After a crazy busy couple of weeks we are back to our regularly scheduled programing- of course that means muscle juice while at the Eras tour 💖🎉

Levi's infusions are about 5 and a half hours so it's definitely interesting trying to keep him busy! Doing our infusions at home now gives him much more freedom but he still has to bring his IV pole around with him and be cautious of the tubing.


In other news... This little guy will be 3 on Wednesday! You are clever and wild like a velociraptor and even more brave!
Keep shining my little star ✨💚💙

Taylor Swift

It's muscle juice Monday and this little bunny is enjoying a sweet treat while he gets his infusion. 💚💙🐇

https://m.youtube.com/watch?v=ecRCw4NKcJ8&pp=ygUSbm9yZCBwb21wZSBkaXNlYXNl

Here is a great explanation of what Pompe Disease is from the NORD website. 💚💙

Pompe disease - causes, symptoms, diagnosis, treatment, pathology What is Pompe disease? Pompe disease, also called glycogen storage disease type II, is a genetically inherited condition caused by insufficient functioning o...

What a perfect day to open up this page and spread awareness about Pompe Disease.

Happy international Pompe day! 💚💙

Levi was diagnosed at 13 months old with Infantile Onset Pompe Disease (IOPD). For this disease, that was incredibly late for diagnosis as his heart was already severely enlarged. Typically those with IOPD that don't start treatment will pass away by the age of 2 from heart failure.
We were incredibly lucky that an abnormal fever brought us to the ER and had the pediatrician on site questioning his heart in the x-ray they took that day.
He immediately contacted McMaster hospital and we were sent there by ambulance to investigate what was happening. After spending a few days and having many many tests done we had a visit by the neuromuscular department head and after just looking at Levi he told us it was Pompe disease. This doctor and his incredible knowledge about Pompe disease saved Levi's life. He set us up to begin treatment a couple of weeks later right there at McMaster hospital.

Now we had known something was wrong for a while but we had been dismissed as these were things he would simply "grow out of". The first indicator the doctor at mac noticed was one I had asked about at every single doctor's appointment Levi had since bringing him home. The bi-facial muscle weakness caused an open mouth posture and his enlarged tone was always sticking out. This caused issues with feeding and breathing. He also had a severe decline in muscle tone. In March of 2023 Levi could stand holding on to the bars of his crib... By May, just two months later he could not even straighten his body and was always in a sitting position when lifting him up.

Levi's treatment is an enzyme replacement therapy in which every other week he gets an infusion through his port to put that enzyme that he does not produce on his own into his body. As of now this infusion takes about 5 and a half hours every other week! We have seen incredible improvement in the year and a half he has been on the treatment. His heart has completely recovered, you would never have known there was an issue! His skeletal muscles are still slow to build up but he is definitely one determined little guy so we are hopeful one day he will be able to stand and walk on his own!

This is a progressive disease that will require him to continue treatment for his entire life. We are hopeful for the wonderful doctors that have already made so much progress in continuing to make the lives of those with pompe disease better!



💚💙