At the time of our son’s diagnosis, our family met another Canadian mother, Josie De Sousa, whose son also had ALD.  Unlike my son, this child tragically had been diagnosed too late to be eligible for treatment.  He sat on a waiting list for two years to be assessed for ADHD, and all of his neurological symptoms were dismissed due to a lack of awareness of ALD. Jayden De Sousa was a ...

Dalton Minnick was diagnosed with ALD at the age of ten after starting to have some difficulty in school and with hearing problems. Dalton went immediately to the University of Minnesota, where he received an umbilical cord blood transplant on August 29, 2016. Dalton did exceptionally well during the transplant but tragically developed acute graft vs host disease of the intestines. Dalton ...