I have same disease that took my dad but I am too busy living to be worried about dying
Student on a mission to fund research
College, has also made it her mission to raise awareness of the devastating genetic condition that damages nerve cells in the brain, causing uncontrolled movements, emotional problems and loss of thinking ability.
She said: “Hardly anyone knows what Huntington’s is. Unless someone in your family has it or you know someone else who does, awareness is pretty non-existent. We did a collection for the SHA a couple of weeks ago and folk asked us if it was a type of cancer.
“My mobility isn’t as good as it was and to the outside world I might look as if I’m drunk. It’s hard explaining to everyone, including my friends, why I am behaving the way I am.
“When I was 17, I crashed into a van on my bike. I was so confused that police who arrived on the scene breathalysed me even though I had never had a drink in my life.”
She added: “Hopefully by speaking out, I will help other young people living with the disease realise they are not alone and that they still have time to live and accomplish as many of their r dreams as they can.
“Researchers are constantly y making advances in their hunt for r a treatment so I want to raise as s much money for charity as I can.
“Hopefully, one day people living with Huntington’s will have a brighter future.”
There are estimated to be 1100 people in Scotland living with the condition but as many as 6000 are potentially at risk. The average age of the onset of Huntington’s is between 33 and 45 but the juvenile form can begin at any age and is diagnosed if someone shows symptoms before they turn 20.
As Emily’s dad had the disease, her mum Maureen knew there was a 50:50 chance their daughter would also develop the condition.
Maureen, 45, said: “Although Emily could not be tested for the HD gene until she was 18, I knew in my heart of hearts that she had the disease long before that.
“She started showing symptoms when
Researchers are making advances in the hunt for treatment so I want to raise as much as I can
she was 14. Her mood started to change and I noticed a slowing in her movements. “She turned 18 in November 2016 and she got tested soon after. We had to wait several months for the result as Emily had to be prepared psychologically for both outcomes. We got the result on April 5, 2017. “A Although I wasn’ t surprised by the result, it still floored us. “Telling my mum and dad that their precious grandda ugh te grand daughter had a life-limiting condition was the worst part.” Emily’s dad, who was just 34 when he passed away in January 2007, got tested for the HD gene in 1997, when he and Maureen started thinking about trying for a family. Mark, who lost both his dad James and older brother Kevin to the disease, tested positive and they made the decision not to have children.ren. Maureen, who is now married to valeter Craig, 40,40 said: “When Wh it was confirmed Mark had the disease, we decided not to have kids but a few months later I fell pregnant by accident.
“I was offered a genetics test at that stage to test if the baby I was carrying had the faulty gene but was told if it came back positive I would be made to terminate the pregnancy. I refused to have the test and this caused a lot of friction between me and Mark as he didn’t want a child of his to go through what he was.
“Even though Emily has the gene and has a tough battle ahead, I have no regrets as she brought such joy to Mark during the last years of his life.”
She added: “I always hoped Emily would have her dad’s blue eyes and curly hair but not his faulty gene – but she got all three.
“There are things she will never be able to achieve and that makes me sad but we have lots more photo albums to fill with her adventures.
“The future may be uncertain but the present is a gift.”