Theme: Stem Cell Transplant

In this clip from Courageous Parents Network’s interview with pediatric psychologist Dr. Joanna Breyer, author of “When Your Child is Sick,” Dr. Breyer discusses how she helps families consider transplant or therapies that have differing levels of likely success. How to balance the considerations of side effects vs. likely outcomes.

Theme: Stem Cell Transplant

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?

Theme: Stem Cell Transplant

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.

Theme: Stem Cell 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.

Theme: 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.”