Hear from Adrenoleukodystrophy (ALD) Families
Although everyone's experience with ALD is different, it can be helpful to hear from other families navigating diagnosis, symptoms, management and everyday life.
I think the magic that Ruairi has is his tremendous desire to laugh, to have a good time...He takes every single opportunity to go out and have a good time, to be a young man, to enjoy himself.”
Join Aaron and his wife Deirdre Corr as they share their journey about ALD. Deirdre opens up about how they pushed for ALD testing for their two sons, Ruairi and Thomas, after they were both diagnosed with Addison’s Disease. Both boys were diagnosed with ALD at an early age and underwent bone marrow transplants. Learn more about the Corr brothers and their life now in Exmouth, England.
Something came back on his newborn screening for adrenoleukodystrophy. At the time of diagnosis, I didn't even hear what he said, I just heard a very long word. This is what we have, and this is what Dominic has.”
Listen to the Vutrano Family as they open up about how their son Dominic was diagnosed with ALD through newborn screening. Learn how the family works with their care team to monitor for cerebral ALD and how they navigate life after diagnosis.
Jack has taught us a lot about living at his speed. But if you slow down, you realize how much you’ve been missing. I know all parents feel like their kid is special, but there is something magical about him. Honestly, he’s amazing.”
Join the Torrey family as they share their ALD story. Hear more about how ALD manifested in their son Jack, and follow the steps that led to his diagnosis and treatment. See how the whole family came together throughout to live their new normal to its fullest.