We don’t know what the future holds and how we handle that. (post stem cell transplant)
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.”