What is Huntingtons Disease
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of va...
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Hello, all. It's a little difficult to bare your soul to complete strangers, but I really need some guidance. I have Huntington's and my boyfriend has a brittle bone disease, both of which are genetic. My boyfriend and I are very family-oriented people. We both really want to experience parenthood before I get ill. Adoption is going to take too long, in vetro is so expensive and not guaranteed, and natural child-having is hard emotionally.
We talked the other night about if we're okay to have kids naturally, and we think we might be, even though we both have fears. The worst is that we'll have a child with his brittle bone condition who will also have Huntington's and fall over in clumsy moments with Huntington's and fall over and break a bone. We also don't know if we'll get our kids tested ahead of time for the disease because I worry about my kids knowing their mortality and using it as a reason not to do anything with themselves. I wasn't around for my father dying of it, we hadn't spoken in years, but I know I don't want to leave my kids with that. I also worry about having a violent episode when I start to show symptoms and really hurting a child who may be compromised already from brittle bone disease. I also know my Mum has stated quite clearly that she would no approve, or be happy for me in any way. She has told me I should give up the idea of having kids (which is sort of similar to telling me I shouldn't be alive because that's my world.) On the other hand, I was prepared to have kids with brittle bones. It might be hard to deal with to at first, but I know it won't be a problem. I was not prepared to have kids with the risk of Huntington's because it is such a horrible, horrible disease. I know it would give Jeremy something to hold on to when I'm gone that's a part of me when I'm not there for him anymore. All of our friends (who are mostly religious) have said they are thrilled at the thought of us having kids naturally when responding to his blog, but my best friend seems to think it's not such a good idea. Of course she also just told me- not knowing that I'm pondering this- that I was so lucky I don't have to have kids because pregnancy sucks and insisted she was right when I told her I would give nearly anything to be in her situation. She is carrying her first child from her honeymoon. She has it all, I have a boyfriend I was afraid until today was going to run away and leave me with nothing left. It's not that I didn't trust him, but between my not wanting to be the girl who says to their guys give me a ring or get out, and Jeremy's lack of clear communication skills, we weren't on the same wave length, that's behind us now. Grr. I've cried for hours over this. I want the right answers, but I haven't found the right research. Help me, friends. I need guidance, and maybe some prayers. (I'm not actually religious, but I am in need of something I can't express.) Posted on 04/10/09, 03:04 am |
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having children is such a personal choice and i PERSONALLY do not feel that because there is a chance of a genetic problem that you should not have children...my husband may have HD and after giving it a lot of thought i am not going to be someone who decides if my children should be born or not. i disagree with the embryonic testing for genetic diseases because i could never pick and chose which child should be given the gift of life...
please do not let other people tell you whether or not you should have your own children...that choice is yours and will always be yours...and no matter what decision you make just know it will be the RIGHT decision no matter what everyone else thinks. 
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Thanks, ammc. It really helps to hear someone say something like that. I'm so confused right now. It's a lot to take in suddenly, but I think Jeremy and I can come to the right decision.
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I spent several hours now to join & write this just for you. So be encouraged.
I hope I can help.How old yet are each of you, kat? I can see how confusing your emotions, dreams & circummstances have become together.you need to discern your real human desires from your selfish ones. Of course its natural to want to be pregnant and bear children. But "experiencing parenthood" will in no way cease as you grow ill - its a lifelong responsibile relationship. If you both want to raise children, I think its best for you & jeremy to marry first. You need to be a commited couple-outside of being parents. Then you will have a solid foundation for a family. I hope you also join a good congregation for love and support. I think you know that you do need jesus. We all do. you will also need jobs. And money. And healthcare. And immediate family. I cannot understand why you say adoption takes too long. You are mistaken. Pregnancy & adoption have similar timetables. In your case, over time, adopting will cost you far less pain & expense. If you adopt healthy kids & they reciprocate love, then hopefully they choose to care for you. But you're right- if you birth brittle &/or hd kids, then everyone has ever greater special needs. And expensive healthcare. Any one of you could harm another with horrid consequence. I know you grive now. but youre right to think of how sad you would be if you did indeed harm your own child. This is not even a sacrifice, so much as an opportunity. So, I beg you: adopt. And share the joys of life. There are Millions Of orphans who desperately need your love! How much love do you have? Peace.
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I don't think you should decide anything this long-term while you feel turmoil. If you don't feel peace, wait and think about it and talk about it some more. A baby is forever, so make sure before you decide. Also, what if you got a sperm donor, and then at least the child would only be at risk for one disease? Just a thought.
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In the time since I wrote this, Jeremy and I have really talked and thought about it, as well as become engaged. We are now planning our wedding, as well as planning to start a family soon after. We have decided, after long deliberation, that having our own children is the best way. We can enjoy them since we are braced to handle either or both illnesses, and he will be able to have a piece of me to hold on to when I'm gone. We have a plan to help our kids financially and emotionally when I'm not there anymore. Now we have peace knowing we can have our family in terms that we are okay with. We know it won't be happily ever after, but we look at it as planting a lemon tree, knowing we'll get lemons, and making the best lemonade we know how to make. Please keep the advice coming, though, since some of you may know something to help us.
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I realize this post is quite late in regards to your post, but I feel the need to tell you this anyways.
When my husband and I were engaged last year, we found out that my father has Huntington's. One of my husband's close (or so we thought) friends and that friend's mother went up to my husband and told him that my father has a genetic disease and that he should reconsider marrying me. That was one of the most frustrating things to hear. My husband, thankfully laughed at it and told them that it didn't matter what I could potentially have, he was going to marry me no matter what. Soon after we got married, we got pregnant. Our family was coming to terms with the idea of my father having Huntington's and I was beginning to worry about the intelligence of my decision to get pregnant. My husband and I started attending church. It was a random decision, as we are not very religious and now we no longer even go to the church (so as you can see it was a short lived thing, but it was probably meant to happen at that time). The day's sermon was about making lemonade out of life's lemons. I had been recently doing a lot of crying and worrying about the HD. A few things were said during that sermon that changed my outlook on life. We can't change what is going to happen to us. God has a plan. If we can accept that God has a plan for everything, then we will find great relief and peace. I say this because I believe that God intends certain people to be given the burden of carrying certain diseases. Everything happens for a reason. And as cliche as that phrase can sound, I have found much peace in it. My sister has a rare disease called Cornelia de Lange Syndrome which requires us to care for her 24/7. Her syndrome enabled me to become very mature and respectful about things like that at a very young age, as I was caring for her a lot. It taught me to find joy in the small things in life, such as when she made eye contact and when she first smiled and giggled with us. My father's diagnosis has allowed my family to come closer together. We now know that our time is limited with my father. But isn't everyone's time limited? Who knows when people will die? I may drive off one day and get hit by an oncoming vehicle. You just never know when your time is going to come. Okay, this has gotten much longer than I had intended. My point here is that I truly believe (based on experience) that God intends for certain people to have certain diseases, as it fulfills a purpose. Therefore, if the child you create does turn out to have HD, do not avail. For that beautiful child will positively touch someone's life and change it forever. And the 50% chance of that child NOT getting HD is a LOT! The glass is half full!
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