Christian, a talented singer/songwriter hopes that his story will bring hope to other young people from HD families. He spoke to journalist Heather Greenaway, from the Sunday Mail, about his experiences. Excerpts from the article are below:
It’s one of the cruellest and most unforgiving diseases on the planet but talented singer Christian is determined not to let Huntington’s define him.
The 26-year-old discovered he had the HD gene six years ago. He got tested after discovering his dad was dying from the inherited condition, which is often described as having Alzheimer’s, Parkinson’s and Motor Neurone Disease (MND) all rolled into one.
Although, Christian, whose father passed away last year, has gone through some very dark times, he is hoping by living out his musical dreams he can be a role model for other young people living with or at risk of having Huntington’s.
The singer/songwriter, who has been tipped for chart success and is hoping to become a music therapist, said: “My dad lived in London and I didn’t see him for a long time, then when I did he was very ill. He passed away not long after that. I loved him and still do, and I hope I can be one of those positive role models for young people living with HD.
“I’m living my dream, recording and performing as a professional musician. I want to be famous so my platform is huge and awareness of HD reaches an all-time high.”
The performer, who started singing when he was three-years-old, said: “While I was at school, I was a member of the National Youth Choir of Scotland and I went on to do a BA Honours degree in Popular Music at Leeds College of Music.
“Since graduating I have been gigging in pubs and clubs up and down the UK. I’m also a member of the band Orchid Fox. We’ve laid down several tracks and are about to hit the Edinburgh music scene.
“I want to use music as a platform to give hope to young people who find themselves in the same position as me. I want to encourage others to follow their dreams and not worry about life ending.
“Yes, knowing you are going to develop HD symptoms is daunting but you could go out tomorrow and be hit by a bus or get cancer and be dead in six months. Life is what it is and you have to live it.
“Music is my medicine, it makes me happy and calms me down when I am stressed. It also brings people together. When I sing I make people smile and the more smiles I get the happier I feel. As well as pursuing a career as a performer, I am also hoping to work in music therapy.”
There are around 1,100 people living with the degenerative condition in Scotland, with more than 5,000 people at risk of developing the disease. The symptoms usually start at 30 to 50 years of age, but can begin much later, and the toll of the disease is compounded further knowing that every child of an HD parent is at 50% risk of going on to develop the disease too.
Christian, who is also a professional prop maker, says waiting to find out the results was worse than being told he had inherited his dad’s HD gene.
He said: “The whole process ended up being very traumatic and took eight months as doctors won’t do the test until they are sure you are emotionally ready. This is upsetting because once you have made up your mind to find out, you want to know immediately.
“In some ways finding out felt like a load off as the crippling anxiety of not knowing was at an end and on the other hand it was a bit whack because where did I go from here.”
He added: “Learning to deal with your own mortality at 21 is an extremely crushing experience. It was like I was cycling a bike uphill with the brakes still on. It was slow and painful trying to propel myself forward but I did.
“I’m happy to be on the other side and in some ways it has made me a
better person and given me a maturity well beyond my years.”
Christian credits the support he receives from Scottish Huntington’s Association for helping him to get through the bad days and to open up about his diagnosis.
The charity, which was founded in 1989 by families, introduced the
Christian said: “I am a really private person and this time last year I would not have been able to talk openly about my feelings but meeting Peter and going to the SHA summer camp, where I met other people experiencing what I am, changed my life and my perspective. I didn’t realise that by bottling up my feelings, I had been isolating myself.
“I had feared telling people in case they treated me differently but now I realise talking helps, as does surrounding myself with people who inspire me and have good energy.”
Last year scientists announced they are working on clinical trials of a treatment that could control the worst effects of Huntington’s. They hope a new drug – RG6042 – could have the potential to reduce the levels of the toxic protein in patients’ brain cells, which is thought to trigger the disease.
Christian said: “Finding out they might be coming close to finding a treatment which can slow down some of the symptoms was another crash moment for me as I had to reevaluate my life yet again.
“I had made my peace with dying and then I was told that I could live into old age and perhaps even see my grandchildren if the trials are successful and a treatment becomes available. I have hope – maybe one day I will be HD free, who knows?
“I’m determined not to waste my present worrying about my future. I’ve made peace with the fact I have the gene. It is a part of who I am but it doesn’t define me. I would not wish it on anyone else but I wouldn’t swap places with anyone else either.
“I’m lucky to still have my life ahead of me as some of my friends have died much younger. I hope, through my music, I can make a difference and inspire others to seize the moment and go after their dreams.”