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 vibrant, intelligent, compassionate young man who loved his family, spiderman, and soccer. He had an amazing future ahead of him that was robbed by ALD and the lack of newborn screening in Canada. ALD is insidious, and in less than seven months he was robbed of his sight, hearing, ability to eat, walk, and communicate. Jayden passed away in September 2020 after fighting valiantly with his dedicated family by his side.

Many other boys across Canada, in the US, and beyond are currently suffering this same fate, and there is now nothing that can be done to help them. This is unacceptable and a failure of the Provinces, Territories, and Federal Canadian Government to provide for the most basic healthcare needs of children. Jayden De Sousa and all the boys who have not made it to treatment deserve better.