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Dear Dad,

I know things are different but at the same time nothing has changed. Like that sentence nothing doesn't make sense anymore. Of course I always knew there would come a time that you wouldn't be here anymore but I always expected it to be like a fairytale. That you would close you eyes at 80 or even 90 something old and just fall asleep. If I'm being honest, that's what I'm scared of most that you might not even make 60 let alone 90 (even though you would say that was a bit of a push). That you won't get to do all the things you want and deserve to do at that age because the reality is you might not physically be able to. I feel silly writing this because your still here and HD hasn't set in yet. You are still your cheeky, funny and sometimes weird self that we all love even if you do our heads in. Your still one of my rocks and that person I know I can always come to and talk to whether it's day or night. You are also now a Grandfather and may I say even the bestest one I know. I would give anything to find out that both myself and your grandchild don't have this disease, just to bring you some comfort of knowing that at least one of your children and their family is ok. But I also couldn't bring myself to tell you that we are positive for HD, especially as the reality might be you might not be around before your grandson can decide to be tested. I never want you to even think you will or before a burden to us, because quite frankly your one of the reason we are 'us'. Your my Dad and always will be no matter how long we have. I am so incredibly proud to be yours but even more so because your bravery and honesty has helped me realise the important things. We all still woke up this morning when someone else didn't, we spent our days working that some people can't do and we came home to a house and food on the table, surrounded by people we love. We are already so rich for what we have, HD is just part of that day. That's the reason why I am doing this because I want to document the good days before the bad come along, I want people to remember you as the person you are know not for your illness or your fate. I want everyone to know that HD can jump into anyone lives and take their journey on a different route. But above all this I want them to know you are an amazing husband, a devoted father and the bestest Grandad there is and thats what defines you. Not HD.

Love you always,




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