Bit depressing but very interesting to know what you think as ataxia’s and carers. Last night’s tv programme on Downs Syndrome got me thinking. I am confused though. Way back when I was pregnant my husband and I chose not to be tested for Downs. Close friends do have a daughter with Downs Syndrome and she is gorgeous but severe cases are hard work for the whole family. Scary that Iceland have all new foetuses with Downs terminated!
Part of me thinks we all have a right to be here and you have to die of something. Also IF our families had known about ataxia and chosen not to have us none of us would be here. Personally though as soon as my Dad was tested and they offered testing to me and my sisters I grabbed at it because I had 2 small children. When I got a positive result I decided I did not want to risk any more of my babies catching it off me and so I was sterilised. I am glad we did not know earlier. Since then my grown-up son has tested negative and I cannot describe the relief of knowing my baby is clear. My daughter has not chosen to be tested yet. It is so hard though and she has reacted badly to her brother’s testing and growing up knowing you have a 50% chance of having the faulty gene is so difficult. This is when I think safe embryos are good but are we selecting who to have in our culture?
Sorry the topic is so heavy and I think like all things I will get a very mixed response but it will be interesting.