Quantcast

Adrenoleukodystrophy (ALD) Online Support Group

New ALD diagnoses


#1

My name is Suzanne. I recently became a mom of three. I had a sweet baby boy on March 12th. He is a miracle to us. He alerted us to the fact that our older son has ALD. It was picked up on the newborn screen. In January they added a test for VLCFA. Our older son is four and a half. We were devastated by the diagnoses, but moved quickly to assess our four year old. Last week he had an MRI that the doctors agreed was normal. They both had a normal neuro exam, and normal cortisol and ACTH levels. We are waiting to have the stimulation test. We are so grateful for the early diagnoses, and the opportunity to help our boys, but we are sad and petrified of the unknown. I have no idea what the future holds for my family...


#2

Suzanne, early diagnosis is such a plus here and should make a positive difference. I hope as many members as possible will give input here, as it is so much less scary to face the unknown when there is someone to guide you on that path.


#3

With the knowledge you now have comes power. A total game changer for your children and your future.


#4

Hi Suzanne. I’m so glad you joined our group. Early diagnosis is a great advantage. The fact that that their MRIs are clear and cortisol levels are good and they are not symptomatic is a very good sign. Sounds like the docs are on top of it. If they do become symptomatic there will be time for treatment. My son was 9 when he was diagnosed and his MRI showed brain changes. He had a bone marrow transplant and is now ALD free. He’s 14. Believe me I do feel your fear. I’ve been there. ALD can be survived. You have time on your side. Please keep us posted. We are here for you. Chat soon.
Tracey


#5

Suzanne my name is Lindsay hunter. My son matthew is 3 months old. Born just 28 days after Aidan’s law took effect. He too screened positive through NBS. Baby #4. I would love to talk and be here to support eachother.
(315)■■■■■■■■
8120 rapallo way
Clay ny 13041
Facebook : Lindsay hunter or Matthew’s mission


#6

Lindsay, you can friend request and private message your information to Suzanne. You may wish to delete it here in the discussion, as it could appear in a google search. I am sure Suzanne would be happy to accept your friend request.


#7

Hi Lindsay, Our son Patrick was baby #5. I would love to connect, and help support eachother. I will message you with my information.


#8

Thank you, Janis. Your words are so encouraging.


#9

Wow, how incredible that moms of baby 4 and baby 5 are meeting up here on the network. Perhaps the other baby moms will come along sometime, too. It sounds like a special meet-up may be in the making. :)


#10

Tracey, I am so sorry for the pain you must have endured. I am so glad your son is doing well! That is so encouraging. Thank you so much for the support.


#11

I added this site to contact you. I don’t know where my messages are. Could u text me?


#12

Lindsay, on your profile page (Click "My Page" up at the top), your inbox is at the upper right. Click it, and you can see your incoming messages. You can also compose messages to your friends.


#13

Hi Suzanne, Early diagnosis is key, While the unknown can be scary for you, know that you got a whole lot of support. My son was diagnosed 17 years ago. Normal for us is very different from other people, we take one day at a time. Feel free to stay in touch.


#14

Hi Suzanne, just wondering how things are going with you and your son in regards to his diagnosis? We have just recently had our 2yo son diagnosed through genetic testing (as I am a known carrier) & am looking to connect with people who have similarly had an early diagnosis :slight_smile: