• youmeandhd

One Year On... HD Anniversary

May is HD Awareness Month. It also marks a year since HD became apart of our lives. To say it came in like a wrecking ball would be an understatement as the ground we were so secured to just crumbled beneath us. Gradually it started collapsing away piece by piece, thinking about my family, my Dad, Mum, brothers. Then my little family, my son and my boyfriend. I mean why now, why us. Huntington’s Disease clouded many moments I should of been enjoying as a first time mum, I shouldn’t of been worrying about my son’s fate each milestone he achieved or about their future caring for me or even worse without me. I wanted more then anything to escape and run away but I couldn’t. Bottom line I had a job to do and my son’s timing into this world was the perfect heartbreaking situation. I could spend each day overlooking his smiles and laughter thinking about what a positive result for me might be for him. Or I could embrace him in my arms and know that whatever happens he’s safe and we will fight. I started You, Me and HD to document my thoughts, feelings and battles coming to terms with this disease. I never thought within a space of a year I would be as positive as I am today. Don’t get me wrong if I could change this genetic mutation I would but I can’t so what’s the next best thing. You, Me and HD has brought me happiness through pain, friends through circumstance and family through a common battle to find a cure. This is what I want my son to remember always that his mummy tried everything and did as much as she could for not just him but for others. For people to see the positive light in the darkest moments. To find the perfect balance of acceptance and determination. No mother can protect their children from everything but whatever I can, I will do. That’s what You, Me and HD is about right, now we don’t have a cure but I will shout and scream everyday if it means one more person knows what HD is and can help support someone. I want to say thank you to everyone who I have met through this journey, who offered advice and support, who’s been a shoulder to cry on and who’s made this world feel less small. Each and everyone of you is a hero and someone I will never forget. Going forward I hope that this space only continues to grow and one day each of you can stand with me and say we did it, we found a cure! So here’s to hope and continuing to fight back against the odds. Love you all, take care and stay safe,

Charlie

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