Little Steps! Making progress. 

Today we are celebrating with Issac! I have shared about Issac here before in a couple other posts over the years. He is my wife’s cousin once removed – I believe that is the correct terminology. Issac is a 14 year old boy. He was born with Hurler’s disease. Hurler’s disease is a genetic disorder that has a wide spectrum of developmental symptoms. Skeletal development and cognitive development are the primary issues Issac battles. He has overcome many abnormalities due to a bone marrow transplant he received at a very young age. His battle will always continue. He has had 100’s of procedures and surgeries. In 2022, Issac lost mobility. In 2024, he had a major procedure to correct his neck so they could tube him (insert endotracheal tube to the airway) for his surgery to correct his back. He also had at least two long term stays in the Children’s Hospital in Delaware receiving traction on his neck and body. I am not sure if the traction was before or after the back surgery at this point. He has had many more procedures since then. He is such a tough little boy. Thankfully he does not understand 100% of all that has happened to him. 

By the Grace of God Issac has partially gained his mobility. Last week we had an opportunity to gather with Issac and his family. His mother gave her perspective about how Issac’s independence is developing, now that some of his mobility has returned. With HARD WORK of course! She told us a story of how she came out of the house expecting to find him riding on his bike scooter in the culdesac, but determined that he had taken off to go riding in the neighborhood! Before we parted ways on our visit, I told Issac I wanted to see him walk.

WE CELEBRATE ISSAC LITTLE STEPS MAKING PROGRESS!

Have a FUN FRIDAY! I Hope you take those little steps this weekend!