Graysen's Journey

Hurler syndrome is a rare genetic disorder caused by missing or non-working copies of IDUA enzymes which doesn’t produce a sugar molecule. Essentially, the “trash” is building up in Graysen’s little body and the “dump trucks” are not hauling it off and so it eventually, it will attack his heart, organs, brain, lungs and result in death. With no cure for Hurler the best treatment is a bone marrow transplant. This is the only treatment option that can pass the blood brain barrier. After 10 days of high-dose chemotherapy and a ”Rest Day”. Graysen had his bone marrow transplant on January 19, 2023. After over 3 months in Duke Children’s Hospital, Graysen was released to “Outpatient Care”. Graysen had to stay close to Duke Children's Hospital and Health Center. This was to ensure that we had easy access to our transplant team should Graysen get a fever, have trouble with his central line, or experience any other health problems. During this time, Graysen has had Doctor visits for frequent checkups, monthly infusions, blood-work and other test to make sure he is on schedule with his transplant. He stayed in North Carolina for almost 3 months in "Outpatient Care". On May 24th 2023 Graysen’s Doctors felt he was well enough to finally  come home to Floyd with weekly trips to Roanoke for bloodwork and weekly infusions.Living with Hurler, Graysen may be faced with lifelong surgeries to help him live as close to a normal life as possible. Graysen will have to be monitored closely even with just a runny nose or a slight fever. To a healthy child this may be normal, to Graysen this could lead to a greater challenge, signs of something more serious and even life threatening complications.