Hurler Syndrome: My Son is My Hero

March 4, 2016

My name is Emily Davis. I got pregnant with my sweet boy in November of 2013. We named him Isaiah Leon-Charles and he made his arrival on July 30th, 2014. at 8 pounds, 1 ounce.

In our eyes, he was perfect. Completely healthy…

Or so we thought.

One day, he started having chronic ear infections and we couldn’t get him on a sleep schedule no matter what we tried. He always snored very loudly and we never thought anything of it. He had ear tubes put in during May of this year.

It didn’t help a thing.

The next step was an adenoidectomy, which he underwent about a month ago. There was still no improvement.

While they were trying to get his breathing tube in, they had complications. They brought in equipment from the NICU, followed with an overnight stay for observation. The anesthesiologist got in contact with his family doctor and he was referred to genetics. It seems they thought he might have a very rare, genetic disease. after that, everything has happened so fast.. we took him for the testing on the 11th.. the next week was waiting.. just waiting to hear our babies outcome.. well on September 18th, 2015, we got the results… they were positive for Hurler Syndrome.

Isaiah had his bone marrow transplant November 3, 2015. He is doing wonderful. We are now preparing for nuero surgery sometime in late April, early May. His skull has fused together in places it wasn’t supposed to yet, so his brain can’t properly grow. His left hip femur is also “slipping,” as we are told.

We know that this is just the beginning of our journey. We are standing strong as a family and battling this together. We’d love to be in touch with another family dealing with these circumstances. Please feel free to comment below if you’d like to be in touch.

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