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Earlier this year, I lost my amazing Dad to Huntington’s disease, after a 15-year-long battle as a family.
All those years ago, when Dad was diagnosed with the illness, we had no idea that HD ran in the family. Dad had been unwell for a few years and, after a long battle with the NHS and his GP, he was finally diagnosed with the illness when I was around 18.
I remember talking to him about it and him telling me how relieved he was because he finally knew what was wrong. Even though there was no cure, at least he finally had an answer. He had questioned whether he was losing his mind after being repeatedly told by his GP that he was fine.
But once the neurologist told us that the illness was hereditary, he definitely blamed himself for it. He felt a lot of guilt knowing that everyone in the family was now at risk.
About 12 months later, at the age of 19, I decided to go through the testing process and was told that I was gene positive. I got my results a few months before my 21st birthday. I remember that day so clearly, crying with my Dad in the hospital after being told the results.
Pretty much straight after that day, we started caring for Dad at home. My sisters were only 12 and 13 when we first began, so for the first few years, it was split between my mum and me. Once they got older and understood more, the responsibility was shared between the four of us.
I remember that, at one point in my life, I was at university, trying to hold down a job, caring for Dad after work and on my days off, while also trying to have some sort of normal life and socialise with friends.
My mental health definitely took an impact, and the constant stress made me do anything I could to escape what was going on in my life. I used drinking and drugs as an escape and as a way to avoid the darkness that I was feeling.
For a long time, I hated birthdays because they reminded me that I was another year closer to becoming sick. Being told at the age of 20 that I was gene positive felt as though I had been given a life sentence, and it caused me to live in fear for so long.
I battled with suicidal thoughts and depression for most of my adult life, and I was having panic attacks most days.
Until I reached a point where I was at breaking point. I ended up finding God one night while crying on my bedroom floor. I sat there reflecting on my life and everything I had been through.
I was 32 years old, and my Dad was coming to the end of his life. I just sat there and knew that I probably only had a few years before I would have to go through this all again. I just didn’t have another fight that long in me, because I had given every ounce of myself to caring for Dad.
Shortly after, I joined a church here and was baptised that same month. Since then, I have made the choice to go sober because I want my mind to be as clear as it can be. I knew the impact that drinking can have on HD, and I had seen first-hand how it can make symptoms worse. I didn’t want that to be my story too.
In October, I will mark three years sober and three years since giving my life to God. It has been the best thing for my mind and my heart. It is something to cling to when things get dark again and those fears start to creep back in.
In June of this year, I was told that I am now fully symptomatic at the age of 35. It has been such a hard couple of months, and I know it will continue to get harder. But I know that God will continue to carry me through every day.
And I will continue to pray, not just for my miracle, but for a miracle for my whole family.
Since finding out I was sympathetic I have lost my ability to work and drive along with my independence. I am struggling to come to terms with that this is supposed to be the beginning of the end. I am choosing to believe it will be ok, and that my miracle is on the way.
My Amazing Dad
