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Huntington's Disease

Does anyone know of any groups that are sort of positive for parents of children with Huntington's Disease?

Our daugher, who came home at age 6 in August, 2008 as a foster placement and had her adoption finalized in May, 2010 was given a confirmed diagnosis of active Huntington's Disease with a very high number of repeats this week - in fact, we saw a children's geneticist Friday - after her 9th birthday on Thursday.

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Asked by AAAMama at 3:36 PM on Dec. 19, 2010 in Kids' Health

Level 18 (6,173 Credits)
Answers (6)
  • I'm so sorry ! I truly wish I could help you. My parent's neighbours have a daughter with Huntington's...she is my age....and they are having such a hard time with's devastating. They are so lost for any help and don't know where to turn...I was friends with her, but she wants nothing to do with me or anybody...I'm sorry I can't be any help....but I just wanted to say I'm sorry....and am hoping to follow this post as well so that I can also pass on any information....This girl is also adopted by the way....her bio-mom was an alcoholic, so everyone assumed her problems were related to an alcoholic pregnancy, like FAS....but, no, it's huntington's.

    Answer by FXmomTo3 at 5:23 PM on Dec. 19, 2010

  • We DID know when we got placement of both girls (we brought a newborn half sister home from the hospital who is now 22 months old as well) that the bio mom, bio aunt and bio grandmother had (or suspected that they had) HD. It's VERY rare for HD to onset in a person under 20, from what I gather, but our daughter just turned 9 and is in active HD already.

    We thought her behaviors were a result of RAD and PTSD - both of which impact her - but learned Friday that may not be the case.

    I said to the geneticist that I would like to believe that if we're able to sort out all the issues, our daughter CAN have a good life. She said, "I don't mean to be upsetting but she will likely NOT have a good life. She will have a rough, hard life but it will be so much better NOW than it would have in the old enviornment."

    I almost think what I need most right now is to know how real people are impacted - if that makes sense?

    Comment by AAAMama (original poster) at 5:33 PM on Dec. 19, 2010

  • I am so sorry for your daughter. Huntington's is a difficult disease for an adult to deal with, I cannot imagine what it does to a child. It is a very rare diagnosis for children or really anyone under about 45. Contact the Huntington's Association (I think that is what it is). There is a wealth of information out there, you jsut have to find it. Mayo Clinic is also a great resource. I hope you find a support group for your daughter and your family. The only people I know with Huntington's are elderly and it is devestating to them. One was a social worker and now he can't even talk. The other was an engineer and doesn't have it as bad, yet. If I can find it, I will get you the websites I have on Huntington's, I know for sure one is Mayo Clinic.

    Answer by tyfry7496 at 8:51 PM on Dec. 19, 2010

  • I have no idea so I'll bump you. Good luck.

    Answer by MyAngel003 at 9:30 PM on Dec. 20, 2010

  • my uncle had it. His mother died of it & he passed away of different causes shortly before the onset. It's devastating.

    Answer by Ashlynnsmommy07 at 10:02 PM on Dec. 20, 2010

  • i would search for some support groups, ask a social worker at the hospital. when my oldest was diagnosed at 2 years old with 3 congenital heart defects, i found a support group of parents... and while they are a weath of information, it just helped to know another mom out there feeling like i did...

    Answer by asil at 6:16 PM on Dec. 21, 2010

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