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Adrenoleukodystrophy (ALD) Online Support Group

Can you reach out to Sue?

Hello, ALD community members!

Sue from Vermont is new here, and I know you will be able to relate to her struggle. Her son has just been diagnosed, and school’s just starting: it’s a tough time for the whole family.

Here’s @Sdkearney 's profile story:

Day 3 of 10th grade. Sensing cognitive decline, ALD diagnosis is new, still waiting on genetic test confirmation. My son is just talks with tears welling that he is already behind, does not want to go to school. We had testing done last year that showed slow processing speed … I encourage him and say he has to attend school. I do t know if he is able at this point We have initial neuro appt next week and no mri yet. Should I push? I know he is so transparent in what he is feeling expressing… should I just meet with the special ed folks tmrw, lighten his schedule? Yes that’s plan for tmrw and go from there, one step at a time

Maybe you’ve been where Sue and her son are now. Can you offer some words of wisdom or reassurance to her? I’m sure she’d appreciate that.

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All the best to you and your family, and we hope you’ll drop by to give Sue some support soon.

Seenie from Moderator Support

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