Bradley Hartman

10th December 2014

Bradley was diagnosed with ALD when he was 4. Barlow, adopted as an infant, searched for her birth mother ever since she turned 18. She reintensified the search when she felt her son’s physical and behavioral problems might have a genetic link to her side of the family. “At age 3½, Bradley had bouts of vomiting, diarrhea, high fever and strange behavior,” said Barlow, a single mother who works as a licensed vocational nurse for Kaiser Permanente. “I was very frustrated. At the time I worked in pediatrics, yet I couldn’t find out what was wrong with my child. “It was diagnosed repeatedly as viral syndrome, but I knew it was something else. I had a 3-year-old boy, and I had no answers.” “They had found my mother (Paula Sauter of Cheyenne, Wyo., and she was in the audience,” Barlow said. “It was quite a surprise.” What her birth mother told her wasn’t a surprise – she is an ALD carrier. “I had four brothers, and all died of the disease,” Barlow said. “At least that’s what we believe, because ALD wasn’t diagnosed back then. However, all signs point to ALD. “I am grateful for what (Sauter) did. Contacting her could have devastated her life. She might have had a husband and family who didn’t know of her past. I took a chance because I needed answers.” Sauter had another daughter. Barlow’s half-sister is also a carrier. One of her two boys tested positive for ALD.


17 hours ago

ALD Life

We are delighted to announce that on the 15th May 2019 ALD Life will become Alex, The Leukodystrophy Charity (Alex TLC), able to support people with all Leukodystrophies, where no other support is available.

We’ll still be providing people with ALD and AMN the high-quality information, support, services and networks they already expect from us, but we want to help people with similar conditions and their families to have access to these too.

We will be sharing more information about the launch in the coming weeks, so stay tuned!

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