tag:blogger.com,1999:blog-10081281.post8413933002514951562..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: At-risk Angels pitcher Joe Smith at Huntington’s fundraiser: ‘I’d give every dime I have for a cure’Gene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-10081281.post-37473818886210602922016-06-28T14:28:36.020-07:002016-06-28T14:28:36.020-07:00Hi Lois,
I completely sympathize with your situat...Hi Lois,<br /><br />I completely sympathize with your situation and understanding of the problem and solution. With the genetic testing available, if everyone at risk behaved as a responsible parent to their unborn child and had the test in utero, this disease could be eradicated in one generation. There is no reason for this disease to still exist.<br /><br />No one is saying if you are at risk, don't have children, just be responsible and don't condemn your children who as a parent you only want the best for, to die a inhumane death you wouldn't wish on your worst enemy.<br /><br />I too have two beautiful kids who are at risk because of their father, who similarly won't get tested despite showing early symptoms. It is about the most selfish thing a patent could do to their child.<br /><br />God clearly doesn't care, why else does this horrible disease exist and persist otherwise.<br /><br />Great post Lois, more people need to think like that.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-7870772293616246322015-10-14T22:11:03.821-07:002015-10-14T22:11:03.821-07:00Hi Lois,
As HD is a very devastating disease, I ...Hi Lois, <br /><br />As HD is a very devastating disease, I am not sure if you are aware of the over context of your post. Personally, I find some of it to be extremely rude and lacking compassion. While I can understand your frustration with your boys father because he is choosing to live a careless life regarding his boys and that irritates any good mother, I can't understand the reason for sarcasm in your post. It is likely that maybe the father of your boys is in denial and apathy is part of the disease. <br /><br />My father suffers from HD and is the oldest of 10, six of his sibilings have HD, in which 2 have already passed at young ages. Obviously I have a 50% chance of having HD. What I can tell you from the being at risk point of view is this, being at risk is enough for someone to think about. I am 27 years old and have 2 beautiful children. I had my children before my father was disgonosed, but even now knowing he has HD and there's a chance I could have it I wouldn't live my life any differently. Setting limitiations on an indivduals pursuit of happiness because the have this disease doesn't seem fair. I do believe that gebteic counseling is necessary and being honest with your partner is necessary, but I don't think living a life without children or unfulfilled is totally necessary either. <br /><br />I believe the Lord will choose that path for individuals and while we all feel differently about it because we are affected differently, I don't think it's fair for our lives to be limited. We wake up every day and think what if and we watch our loved ones suffer just as you did. <br /><br />In your post, it comes across as if all of us who aren't risk or have HD just carelessly choose to pass the disease on or make it sound as though those with HD are infected or contagious. The HD community should be a community of HOPE for a cure, it shouldn't be a community in which we are encouraged to live our life with limits. We want and deserve family too. Ultimately, a couple with one who carries the HD gene and the significant other should seek the Lord and Genetic Counseling when it comes to their future reproductive plans, hopes, and dreams. They shouldn't be encouraged to completely give them up, as your comment sounds as though that's what one should do.<br /><br />God Bless You,<br />Kaycee Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-50131603909151253982015-10-14T17:04:17.994-07:002015-10-14T17:04:17.994-07:00nice article, I had 2 sons that had HD thanks to t...nice article, I had 2 sons that had HD thanks to their father, I found out about it after I was pregnant with my youngest and met his family for the first time, I thought his brother was just drunk the way he walked but was told that he had a disease and there was nothing to worry about. (boy were they wrong). When my oldest started falling all the time at the age of 5 the drs in TX said I was just a over protective mother, but the did some test and one dr asked the family history and told me to get out now while I could, so I contacted my mother in PA and between her and his aunt me and my 2 sons headed to PA. That was in 1993 when the genetic test came out there neurologist asked if I wanted them tested just for the peace of mind and for the SSI. The results came back 95 and 98 CAG repeats I called there father and he said so what, That just made me fight more for the boys and forget him and his family. We lived on our own till I was told by the state I had to get a job. We moved in with my mother in a 2 bedroom condo (things were tight) but we got by and they were the happiest and loving boys even with all the seizures, Stephen had over 400 one day before we got them stopped, we knew he would never wake up from that many and he never did but he never had another one. Russell suffered more joint and breathing trouble along with the seizures, and suffered more at the end. Lost them both in 2004 just 5 months apart. When I called their father to let him know Stephen had pass he said ok but just 3 days later we got a call from his aunt that my mom took cause Russy was seizing and I was helping the nurse, that he had died. I knew then what he had done. To this day none of his family has been tested and there are kids and and grandkids and great grandkids now. So please everyone who knows there is HD in the family get tested and don't pass this terrible disease on to anyone else. Thanks loislois simonsnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-17086117123356277142015-10-14T07:52:37.124-07:002015-10-14T07:52:37.124-07:00Love this! Our community needs more of strong, bra...Love this! Our community needs more of strong, brave people like you and Joe to speak out! xoxox<br />Anonymoushttps://www.blogger.com/profile/13271604405242860400noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-18817214699057212892015-10-14T07:30:37.771-07:002015-10-14T07:30:37.771-07:00Excellent article!Excellent article!Mickie Toetznoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-90726200397459153492015-10-13T22:33:06.109-07:002015-10-13T22:33:06.109-07:00As always, Ken, well done!!!!As always, Ken, well done!!!!Jimmy Pollardnoreply@blogger.com