My dad got tested for HD after his mother (my Nan) was diagnosed last year. He found out he had HD two days before my son was born. Myself and my two brothers we all told a few months later whilst celebrating the arrival of my son. To be told your loved one has tested positive for a disease you hardly know anything about and to then be told you have a 50/50 chance of having it was devastating. However the icing on the cake was the realisation that if I chose to be tested and was positive, then I would have to wait til my son is 18 years old to find out his diagnosis. It’s now 8 months since that day and I still don’t know what to do. I convince myself that you never know what’s around the corner and there is nothing stopping my son from getting another illness or in a freak accident so why should I find out so soon. The on the other hand I want to know to bring some sort of comfort to my family. To tell my dad that we are ok and to let my mum know that she’s not the only one anymore waiting for this horrible journey to unfold.
The last thing I want is for anyone to feel sorry for us, if anything I just want people to understand and know something instead of having to explain it what feels like all the time. I want people to experience it instead of reading the facts. I want a special place that mothers like me can go to and understand the risks of having a child who may or may not have Huntington’s Disease.
As much as I know I want to be able to say I don’t have HD, I know deep down that as a mother this isn’t about me, it’s what’s best for my son and that decision is heart wrenching. My son doesn’t deserve for me to watch him learn to crawl and walk for the first time wondering why he hasn’t done certain things or keeping doing weird things because he has HD. I don’t want to watch him blow out his candles on his 2nd birthday and think he could start developing Juvenile Huntington’s Disease and won’t live til he’s even my age. My son deserves the world as his playground and the people around him to greet him with smiles and love and not know anything different. Most of all he deserves his mummy to stay positive and do everything and anything she can in the time being to help him live his best life. My son has already brought so much light to these dark moments for everyone in my family and his being here is a miracle in itself.
The only decision I can say I have made is that if I was to go on and have more children I don’t want to have embryo selection. The fairest thing I believe I can do is for my children is for them to be equal and face whatever hand we are dealt. Because my little family is going to be just as strong as my wider family because we have each other.
However for some people suffering they might not have that or have lost it through Huntington’s Disease and I urge anyone out there affected to join us. Speak please, share your story and put your faces to the name Huntington’s Disease. We can choose to either stand together or alone. I have made my decision and this is my story, a personal but shared journey.