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Adrenoleukodystrophy (ALD) Online Support Group

Need Advice


#1

My close friend's daughter's baby has just been diagnosed with ALD.

He is 3 months old. The mother is not a carrier. We are all devastated as you can imagine. I want to be supportive but I just don't know what to say other than I'm here for them. This is her first child & all the happiness has been taken away!!

What can I do or say to bring some comfort? I feel absolutely useless!!


#2

Hello, CC, and welcome to the ALD board. First of all, let me assure you that, although you may feel useless, you are playing a very important role in your friend's life. Having a new baby is overwhelming at the best of times, and these are not the best of times. Just being there, being concerned and doing things like looking for support for her are so important. None of us can understand just exactly what it is like for them to have this kind of life-altering circumstance happen. But we can be there, be there to listen, be there to help with chores, and yes, just be there to dispense hugs and tissues. And it sounds like you are SO there. I'm sure your friend appreciates it, even though she may not be able to articulate that right now. Hang in there with your dear friend and her son, CC.

I am not a regular member of this support board, but I'm helping out today. I'm sure you will get some more specific advice on ALD soon, from some of the members of this group.

All the best, and keep up the good work, CC

Seenie


#3

Please call me or have your friend call me. My son was also diagnosed through newborn screening and I can assure you and her it does get better! And I can point you to the right doctors and be there! I've been in her exact shoes!


#4

Thank you so much, Lindsay, for your kindness.


#5

Hey I haven't heard from anyone... Would email be easier?


#6

Members, just a reminder to use private messaging if you wish to exchange contact information. For security, please don't post phone numbers or private email addresses on the site.


#7

My number is almost everywhere on the web. Thank you for your concern but I offer it knowing all the risks. (I have a few safety measures to insure it doesn’t lead to my home address as well)


#8

OK, Lindsay!