Parents of a 4-year old son with Hurler Syndrome who has received a stem cell transplant talk about staying present and getting through his transplant.

Parents of a 4-year old son with Hurler Syndrome who has received a stem cell transplant talk about his courage, his light and how they draw strength from him.

Parents of a 4-year old son with Hurler Syndrome who has received a stem cell transplant talk about how they handle living into an uncertain future for their son. “We know he’s going to need a lot of surgeries in the future. What’s next? We don’t have that crystal ball and that drives me nuts.” “We don’t ask these questions about our healthy son so I try not to think about it with our son who has a diagnosis.”

Parents of a 4-year old son with Hurler Syndrome talk about learning they were pregnant and the fear that this second child would also have MPS.

Parents of a son with Hurler Syndrome talk about the road to diagnosis and all the signs the doctors missed. “When you have children with multiple problems, look at the whole child. The hand doctor was looking at his hands. the hip doctor was looking at his hips.”

Parents of a 4-year old son with Hurler Syndrome talk about their decision to pursue stem cell transplant. “for me it was well Hurlers is a 100 percent fatal, stem cell transplant whatever the mortality rate is lower which is better than a 100 percent mortality rate. We took a shot. The quality of life question is unanswerable so we didn’t ask it.” He’s currently doing really well, but what’s next?