October 2, 2006 mcfadyena

New Considerations

We are considering a cord blood transplant for Trey, so here is the low down on the procedure. A Cord Blood Transplant means that Trey would receive a transfusion of Cord Blood (similar to the way a blood transfusion is given) in order to provide him with the missing enzyme.
Until now, we have only been working towards Enzyme Replacement Therapy (ERT) – not yet available in Canada. But ERT does not prevent Trey’s brain from being affected. Here’s the catch – we don’t know if Trey’s brain is being affected or if it will be affected down the road, but CBT must be done at a very early age before Hunter’s has progressed, otherwise the risk it too high.
We will be having two weeks of intensive testing done at Duke to determine whether or not Trey is eligible. In order to be a candidate, Trey needs to be healthy and the MPS needs to be not well progressed. Also, they will likely try to predict whether or not Trey’s brain is going to be affected in time. If not, ERT is a much lower risk treatment and equally effective. The cost of the testing is close to US $24,000.
If Trey does receive CBT, he would first receive chemotherapy treatment to wipe out his immune system. He would then receive CB transfusions, which would provide him with the enzyme. This would involve two months in hospital. Graft vs Host Disease (GVHD), which refers to the chance of the CB not grafting and is potentially terminal, has the highest chance of occurring during this time. After 2 months, we would move into an apartment on campus and stay for another 4 months. Up to 1 year post-transplant is still a risky time, although. I don’t know how risky or if the risk lasts longer than this. The cost of the treatment is approximately US $640,000.


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!