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The mum of a ten-year-old with muscular dystrophy believes her son is gaining confidence and making new friends thanks to special activity days organised by East Anglia’s Children’s Hospices (EACH).
Kevin Ornat attends fun-packed sessions organised by the physical therapies team at The Nook. They give children an opportunity to spend quality time together and forge connections, while enjoying activities like arts and crafts.
Kevin, who was diagnosed with the genetic condition when he was five, also enjoys hydrotherapy and spending time with the care team, while seven-year-old brother Nathan loves EACH’s sibling days, organised for the brothers and sisters of children receiving care.
Mum Kinga said: “I didn’t know what to expect when we first went to the hospice. It was a completely new experience, so we had an open mind.
“However, I remember being amazed right from the start, and still feel that way every time we come away.
“As a family, it provides us with an environment we wouldn’t be able to find in any other walk of life.
“It’s magical, and both Kevin and Nathan love spending time at The Nook.
“For Kevin, the hospice is a place he can meet other young people in a similar situation, where they can share their worries and struggles, and he’s made some strong connections.”
Nathan is equally positive about sibling days, and when one of the boys is happily occupied at The Nook, Kinga and husband Tomasz are able to spend quality time with their other son.
“Kevin loves the activity days, playing games and spending time in the soft-play room, and it means we’re able to do something nice with Nathan,” said Kinga, who lives near Swaffham.
“We might go to a trampoline park or do something active, which we wouldn’t be able to do with Kevin. It just wouldn’t be fair.
“Equally, when Nathan’s at a sibling day, Tomasz will take time off, and he and I will do something nice with Kevin. We might go to the cinema, coffee shop or do some shopping, knowing the boys are in the best and safest hands.
“It’s an amazing feeling and helps us feel less isolated, especially as our families are back home in Poland and Germany.
“It’s a rare opportunity but something we value and are grateful for.
“I honestly couldn’t imagine life without EACH. Everything would be so different, and it’s not something we take for granted.”
Despite being a happy baby and toddler, Kinga spotted things that concerned her during the early years of Kevin’s life.
Unlike other children his age, he did not enjoy physical activity, and, after starting at mainstream school, he used to cry during PE lessons.
Kinga’s fears were originally dismissed by their family GP, but things changed when the school wrote a letter suggesting he be referred to a paediatrician. A blood test confirmed he had muscular dystrophy.
“It was heartbreaking,” said the 38-year-old.
“I had so many hopes and plans for his future, and then everything changed. It was like our world had been turned upside down.
“We gradually adjusted to a new way of life, and things weren’t too bad for the first three years. Kevin was still able to enjoy some activities, and I taught him to ride a bike without stabilisers.
“However, things have deteriorated quickly in the last two years, which has been very distressing both for him and us.
“Before, he was able to take steps, albeit slowly, but now that isn’t possible, and he needs his wheelchair all the time.
“As a family, it’s hard for us to travel or have holidays, and we can’t do many of the activities we’d like to.
“It’s not easy to pop out and do things, and even a short walk can be tiring.
“Pushing Kevin’s wheelchair is exhausting, and I hate the way people stop and stare.
“Even going in some shops is impossible, because I can’t get his wheelchair inside the building.
“That’s another thing we love about the hospice, because he can go everywhere and is always safe.”
Despite the challenges he faces, Kinga says Kevin, who has been a student at The Clare School, in Norwich, since September, is a happy boy with a passion for cookery, computers and technology. He is also an ‘amazing’ big brother to Nathan.
“Sometimes they complain about each other, but that’s normal for siblings,” she said.
“Nathan is always keen to know when his brother’s going to be home from school, because he’s looking forward to seeing him. They love each other very much and are so cute together.
“Sometimes with Kevin, it’s like having another grown-up in the house! He’s so polite, a little gentleman, and always worrying about my health and wellbeing.
“He gets frustrated, and he’d love to be able get up and run around, like his brother.
“However, he always puts a brave face on it and puts others first.
“There are times after a long day when I feel so down and exhausted, and he’ll always make sure I’m being looked after. He’ll tell his dad to cook the dinner, so I can rest and get some sleep!
“His kindness leaves me speechless, and he’s such a wonderful person – a real inspiration.”
Published in February 2025
