Genetic testing for under 16s - Leukodystrophy Ca...

Leukodystrophy Carers
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Genetic testing for under 16s


Is it hard to get genetic testing for your son or daughter? It is suggested it is difficult for families to get genetic testing for people under ages of 16. Young males with ALD can undertake VLCFA test. However, female carriers don't have another option.

Please share your experience about getting genetic testing for your son or daughter below.

11 Replies

I and all my family are tested. A free Program research of the Public Hospital.

in reply to lellety

Thanks for sharing Lellety.

We ran into difficulty when Kennedy Krieger wouldn't accept our insurance. We wanted to have our sons DNA analysis done so that our daughters could be tested when they are ready. The out of pocket cost was $3,000. With all of the ongoing medical expenses it was and is out of reach for us.

in reply to Momof3

Thank you for sharing your experience with us, Momof3.

I am really sorry to read you have been having difficulty with Kennedy Krieger not accepting your insurance and that you weren't able to have genetic testing carried out for your daughters.

If you would like any support, we have a patient liaison officer who can provide support, advice or information. Please email


Twitter is great to build networks with people! Georgia has a blog on genetic testing. If you would like to read:


Last year, my 12 year old daughter was tested at Duke to find out both if she was a carrier and if she was a bone marrow match for her brother. We had no trouble at all! It turns out that she's a perfect match and NOT a carrier! I've heard people here in the US say that their doctors wouldn't test their daughters who were under 18, but they didn't give us any trouble testing my youngest sister, either, at 17 years old.

in reply to CherylK

Glad to hear you've found it easy to get genetic testing CherylK. I am also really pleased to read your daughter hasn't been tested positive for the ALD gene, and that she has been tested as a match for a BMT for your son. Wishing you, your son and your daughter the best from ALD Life team.

I've had real trouble getting my daughter tested and she still hasn't. I realise now I should have got it done when I had a CVS during pregnancy but I was so pleased she was a girl that I just didn't think of it. It was only when she was a few years old it occurred to me I really wanted to know as I could then decide what I told both my children as they grew up. We have seen someone at our local hospital and the neurological hospital in London and both say no because it doesn't have an affect on her life and won't at least into adulthood, she has to make the decision herself.

So I have to decide when to tell her about this possibility of her being a carrier so she can decide if/when she is tested. She is now 10 and I'm thinking I'll have to start thinking about it soon. I found out when I was 13 and it wasn't a good experience and one I hope not to repeat with my daughter.

I was given my diag as a carrier when I was 15 (5 years ago). I had no trouble in getting it (bar Mayday hosp losing all my papers and having to wait 3 hours for a blood test because of it!)

Would the blood test have been the VLCFA test? If not, I wasn't given an option for that.

Hi Izzabellezi,

Yes, blood tests can be used to check for elevated levels of VLCFA. You can find more information here:


My son was diagnosed with ALD in 2004, age 13 and my girls were age 12 and 16. The doc at the U of MN would and could not test them until they were 18 as they had to give consent, or it could be done sooner if they were pregnant. My oldest is not a carrier, my youngest is.