Today we meet Keir, who is raising a Cup O’ Kindness for all young people growing up in families impacted by Huntington’s disease – and to say thank you to his wonderful mum Mary.
“My dad Mark had Huntington’s disease and Mum cared for him really well at home for as long as possible. At the same time, she was raising me and my two older brothers, Logan and Morgan, while working as a nurse and studying for a degree,” said Keir, 17.
Before the disease took hold, Mark worked as a university environmental research assistant and enjoyed boxing to keep fit. He was diagnosed soon after Keir was born and the three boys watched as HD robbed their father of the ability to walk, talk and swallow.
“When I was younger, I didn’t really understand that Dad was very ill. He had severe symptoms but I didn’t know him any other way so to me he was my dad and that’s how he was,” said Keir, from Falkirk.
“Looking back, I realise how bad it was for him and how hard it was on my mum. We had carers coming in and out but eventually Dad went to live in a care home. By then I knew that we wouldn’t have Dad for long and he died in 2017 aged just 42.”
Keir credits the support of his family and SHA’s youth service (SHAYP) for helping him to cope.
“I was about eight years old when I first began meeting up with Grant, my SHA youth advisor,” said Keir. “Knowing what Dad went through, it’s scary knowing that I’m at risk too so it’s good to have Grant to answer my questions, reassure me that I am doing OK, and just be there when I need him.
“He’s helped me to learn more about Huntington’s disease, including what to expect, and he encouraged me to go to the annual summer camps. I’ve been seven times now and have just signed up as a SHAYP youth ambassador so I can support other young people.
“I used to feel quite isolated but taking part in the SHAYP activities has definitely reduced that. I’m always very open about Huntington’s disease with my friends, especially as many of them remember Dad from when he would pick me up from primary school.”
As he looks to the future, Keir treasures the time he had with his dad. His fondest memory is of a family holiday to Belgium, when Mark’s quick-fire sense of humour had them all in stitches.
Keir said: “We were visiting the Atomium in Brussels but when we got there the queue was way out the door. It was going to take hours to get in but an orderly noticed Dad was disabled and he came over to talk to us. He asked where we were from then led us all to the top of queue. As he left, Dad turned around to us and said, ‘That’s good of them to let us go to the front just cos we’re Scottish!’”
**Please join Keir by raising A Cup O’ Kindness at https://hdscotland.org/cup-o-kindness/ – every donation helps to fund lifeline support for families all over Scotland through SHA’s youth advisors, financial wellbeing team and HD Specialists.**