Huntington's Disease - Telling Your Partner & Having Children HD Free - Tony's Story
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- Опубликовано: 23 авг 2024
- Tony, from Australia, talks about telling his partner about testing positive and their long but successful journey to have children free of HD using PGD.
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Thank you for sharing your journey. Congratulations on the birth of your HD free twins! I am happy that IVF worked for you and your wife. As the wife of an HD positive 34 year old, we have decided not to have children. Each of our journeys are so different and I hate that HD has this hold on us, but at least with your family and ours, HD stops with us.
What unselfishness.
Even though it's hard, you both are heroes for stopping the disease in your family.
What a considerate, comment. ❤
Bless you, Tony..you did the right thing..my son married a woman who never told him about the HD..we found out the week they married..my son wanted children so they did their research and had donor egg IVF and she had twins..she was symptomatic during the pregnancy..I had to move in with them and care for the infants and stayed until she passed 6 yrs later..it affected both my grandkids...they were terrified of her!..by age 5 they were worried they would catch it..they do not know she is not their 'birth' mother of course and wouldn't undestand anyway..Good luck to you..
I know I’m years late on this and maybe things are different now, but when I was 5 I was told I was adopted and I understood perfectly. Children should know the truth.
I don't blame the woman in your story. My mom has HD and even when she was younger and not showing symptoms yet, she was still not in the right state of mind. So, I'm sorry she didn't share her diagnoses, but in my experience with HD, she very well could have been sick. Often times with this disease, unfortunately, I see the person with HD is shown as a villain. My mom used to tell me that I had cancer when I didn't. No one knew anything of HD at the time and she was not showing symptoms. So, her only symptoms were the decisions she was making. That's what people often miss with this disease. Bad decisions are often time an early symptom.
Yes there is I right time to tell children. Thankyou for your comments ❤
A very intelligent answer , yes hd has many situations.
Great story! Congratulations Mom and Dad!! xxxooo
So interesting. Perplexing that the chances are 50/50 and yet so many positives with the embryos, and with people in general during testing. Congratulations on the twins… and for having the courage to stay on the path.
❤ it's great hear that you have found it interesting , thankyou for your comments.
The other consideration based on my niece having had twin girls via IVP/PGD is the expected age of onset of HD for the parent who is gene positive. In her case she began to be symptomatic within a few years of their birth. They are now 9 years old and she has progressed rapidly. She is now living in Assisted Living. It has been very difficult on the children to have a mother so ill when they were so young. And, the other parent ha to be prepared to not only be the breadwinner and the caregiver, but also a single parent. It's a lot! That said it doesn't mean and HD positive adult should not have children. Just think hard about what the other parent's and the children's experiences will be like as HD takes hold.
Juvenile Huntington's is why my husband and I never had children. He had HD and has now passed away. If we had had children it would have been like flipping a quarter betting on the very life of our unborn children‐‐like flipping a quarter because there's a 50% chance for each child born of him or her inheriting the gene & getting the disease when a parent has the gene. In our case, we considered adoption but thought it was too much to put a child who has already likely been through some type of traumatic circumstances. We even thought about having in vitro fertilization from one of his brothers *IF* they did not have the gene, but then I thought I didn't get married to my husband so I could have somebody else's baby. [As it turned out ALL FOUR of his brothers DID HAVE the gene so IVF wouldn't have been an option.]
We were fortunate to have had the choice to make as far as what to do about having children or not having children. By the time it was discovered that their mother had had Huntington's disease, many of his brothers and sisters had already had children so they never had the chance to make an informed decision on whether to have children, not knowing that they themselves carried the gene. SO FAR, I have two nephews who have the disease; yes, the SEQUEL. There is no possible way I can even communicate what a hellish nightmare it is that this disease is continuing on in this family who has already lost so much--7 out of 7 siblings in my husband's family including my husband have ALL now passed from this disease). In addition to the two nephews who have been diagnosed with HD, I have 3 more nephews and two nieces who are at risk for developing the disease.
😊👍💜💜💜💜🇦🇺
Why IVF? Wouldn’t just artificial insemination be easier?
Hi @Loris cook, I believe the reason for the IVF was to test each cycle of embryos that was created for the HD inheritance and decide after each cycle whether or not to proceed with transferring the embryo to the uterus. artificial insemination would skip that process of testing each embryo. Tony had explained that he did 3 initial cycles and wanted to stop because of the HD positive test from each, but the 4th test was negative for the HD inheritance and thus the embryo was used and it turned out becoming twins!
mark s thank you for further clarification.
@@mathew555s thank you for explaining in a kind way. A lot of people talk down, or retort in a condescending manner. You're so very kind in your retort. Thank you for that, and being the type of people we need more of. 🖤