‘We didn’t know anything about this hereditary genetic disease’

Meet Olesja, whose son Mark (26) has Huntington’s disease. His diagnosis in November of last year came after years of health problems, tests and hospital stays. Olesja tells us about the changes she sees in Mark and why she wanted to make both their birthdays extra special this year.

“Before Mark was diagnosed, I couldn’t understand why we were being asked about Mark’s family history in relation to a hereditary genetic disease we knew nothing about,” said Olesja, who lives in Glasgow. 

“Afterwards I was offered a test and I said no because Mark’s result was too much to take in. I’ve spoken to both sides of the family since then and for us all it’s best to leave it there for now. The most important thing is Mark, what this means for him and how he’s coping. He’s changed during the past five years, especially over the past two to three years with his balance, speech and ability to complete tasks becoming more and more affected. He’s lost quite a bit of weight too.

“Mark is a strong man with a lovely nature and he never argues or complains. I’m very proud of him but it can be frustrating because he doesn’t tell me when he’s not feeling well. Mark doesn’t like a fuss or to worry me. Being locked down was hard because before then he went to clubs to play football and badminton, and he enjoyed seeing new movies when they come out. Hopefully Mark will soon be able to get back to taking part in some sport and going to the cinema, which I think will help.”

Olesja, who is a professional wedding photographer, organised an outdoor shoot by one of her work colleagues to celebrate Mark’s 26th birthday and capture the special bond they share. 

When her own birthday came around, she chose to support the wider Huntington’s disease community by inviting friends and family to donate to Scottish Huntington’s Association instead of sending her gifts.

“We’ve a lot of contact with Helen, our SHA HD specialist, who checks in regularly to see how we’re doing, answer our questions and make sure we have what we need. She helps us to understand the disease and what to expect, and we know we can contact her at any time. That makes a huge difference to both of us. My birthday fundraiser was a way to say thank you and help to make sure other families have that support too,” said Olesja.

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