James Update 9/15/2026
In support of
James Humphries
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James Humphries
From James’s CaringBridge page:
“Mom, Dad, James, Gracie and RuRu all went to the Consult Appointment up at Duke Children’s Hospital today. We went into the appointment rather hopeful with a binder filled with research articles and questions but unfortunately there are no cures at this time for children who are already symptomatic of MLD. His only option at Duke (if he gets approved for it) would be to receive a Bone Marrow Transplant. This would require 6-8 weeks of the highest dose of Chemo to bring his immune system all the way down for the transplant. This isn’t a cure, just a shot to extend his life some but to what cost? It would be extremely hard on his little body, and could potentially cause more progression in his MLD.
We are still hopeful to get into Children’s Hospital of Philadelphia (CHOP) to meet with their Leukodystrophy Center to see if there’s are any new trials or if they’ve heard of any that may be in the works. As of right now they want to wait to see both of our little one’s on October 8th to give it time to hopefully have Gracie’s test results back to go over. If Grace has MLD, she would be automatically eligible for Lenmeldy because she is an asymptomatic infant. Lenmeldy is a gene therapy treatment that is proven to give individuals a full and happy life.
This is truly a rock and a hard place. We want to thank everyone for their ongoing love and support for our son, and we ask for continued prayers.”
“Mom, Dad, James, Gracie and RuRu all went to the Consult Appointment up at Duke Children’s Hospital today. We went into the appointment rather hopeful with a binder filled with research articles and questions but unfortunately there are no cures at this time for children who are already symptomatic of MLD. His only option at Duke (if he gets approved for it) would be to receive a Bone Marrow Transplant. This would require 6-8 weeks of the highest dose of Chemo to bring his immune system all the way down for the transplant. This isn’t a cure, just a shot to extend his life some but to what cost? It would be extremely hard on his little body, and could potentially cause more progression in his MLD.
We are still hopeful to get into Children’s Hospital of Philadelphia (CHOP) to meet with their Leukodystrophy Center to see if there’s are any new trials or if they’ve heard of any that may be in the works. As of right now they want to wait to see both of our little one’s on October 8th to give it time to hopefully have Gracie’s test results back to go over. If Grace has MLD, she would be automatically eligible for Lenmeldy because she is an asymptomatic infant. Lenmeldy is a gene therapy treatment that is proven to give individuals a full and happy life.
This is truly a rock and a hard place. We want to thank everyone for their ongoing love and support for our son, and we ask for continued prayers.”
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