[concerned_mom]

Hello. I'm very new to this and didn't even know this disease existed until about 3 months ago. My child's father is adopted. I found out from his adopted mother that his birth mother died at age 50 from this disease. My child's father will not get tested, but she tells me he has exibited a few signs and has two siblings that have been diagnosed. He is 23.
We have a child together. Everytime I look at her, I think of the things that might come if she has it. I would like to have her tested, but from what I've read online I shouldn't, or atleast it should be her eventual choice. I just feel so helpless and lost and scared. I love her so much... and I just hate myself for putting her in this possible position. Everything she does, or doesn't do, or does wrong, I think is a sign. I hate him for not letting me know about this and for not getting tested. It just seems wrong! I got tested for HIV and any other diseases when I found out I was pregnant, why can't he do the same? I know if she has it, there's nothing I can do for her other than watch her slow progression and pray.
I don't know what I'm looking for... maybe someone to give me hope.. some enlightenment? Like I said I know nothing about this (it took me a few attempts to spell it right to even google info) but what I've seen has had me in tears.

[popoki]

Hi,
I am the Mother of a son who has a 50% chance of having Huntington's Dis. My husband has HD and was tested. Our son has chosen not to be tested. He is 35 and has no symptoms of HD. He has two daughters. From my experience of watching my husband's Dad die of HD and now caring for my husband, this is truly an awful disease, but it should be the choice of an at-risk person to be tested. It is hard enough to deal with the fact that you have a 50% chance but also it makes you very aware of any changes in your body and the possibility of it being HD. Some people can handle knowing they have the gene and others can't. Wait until your child is old enough to be able to learn about HD and provide as many answers to questions as you can. If you need help, there are physicians who know about HD and can help. Also, go to the HDSA website to find more help and information available in your state. I know the pain and worry of having a child at risk for this disease and it is not easy. But you have to respect the decision your child will make on whether to be tested or not. It is a decision only they can make. And, if this will help, put your child in God's hands and hope that a cure for HD will come before your child has to deal with being tested or not. God Bless.

[Tori]

Hello,
I am going through the same thing, my daughters grandmother died of HD x the age of 45, she has two sons and they refuse to get tested, so im not sure if my daughter is in the clear or not, I really want to get her tested but my doc said she has to be 18 and willing. She is 7 yrs old, I am so scared, I really want to know so I can find the best possible treatment for her, I think the parents have a right to know what is going on with their children, its not like we are hurting them by having them tested and its not like they would hate us for it!!! We are just caring individuals who want the best for our children!!!

~Tori

[concerned_mom]

Hi Tori,
I'm sorry to hear that you are in this position as well. If you don't mind me asking, how have you dealt with this? I try and NOT think about it as much as possible. I get so depressed, imagining the worst. It's just seems selfish to me that people don't get tested. I know that it's scary to be in this situation, but it's also irresponsible to have children and not get tested. If it's scary for people at risk of HD, why would they want to pass that worry/fear/future on to their children???

[Tori]

To Concerned_mom

You know how I am going to deal with this? I am calling her doc on Monday to see what can be done, I don't care what others may think, I think parents should have the right to know, especially if its not hurting your child what so ever. I hope you can do the same to prepare are our children and our selves for the best treatment possible and to give them a life full of fun and happiness (not that we don't do that already) but life is too short and we need to make the best of it, time is so precious.
What happens if your child DOES carry the gene, If you have to wait until they are 18, that's a lot of time wasted not knowing when you could be doing everything right now like: saving money, researching on treatments, ect. ect. There is a lot of planning involved with HD.
I feel for me, Its only going to hurt worse the more I wait and the more I imagine. To everyone who may dis-agree, please keep your comments to your self, this is how I feel and no one is going to change my mind, I love my daughter very much and I want the very best for her.
Hang in there concerned_mom and do whjat you feel is right, let me know.

~Tori