Layton's Treatment for Hurlers Syndrome

Layton was diagnosed in March 2015 whit Hurlers Syndrome. He has been receiving enzyme replacement therapy for almost two months while waiting for a bone marrow match. We now have a confirmed match and will be heading to Cincinnati Children's Hospital at the end of May to undergo prep for the transplant. Once he gets his new bone marrow it will take between 6 and 8 weeks for him to recover enough to be considered for release. Once we get discharged we will still need to stay in the Cincinnati area for the next few months due to multiple appointments per week. He will also continue receiving enzyme replacement therapy for up to 8 weeks post transplant. We will need to get to at least 100 days post transplant for them to think about sending us home. Total recovery for Layton will take up to 2 years and he will be immune compermised for those 2 years and have to be closley monitored throughout.