Krystian

Krystian, from Derby, has rare muscle weakening disease Duchenne Muscular Dystrophy. He was diagnosed when he was eight-months-old.

For parents Adam and Agnieszka, the news was devastating. “We knew there was a problem as Krystian wasn’t developing properly,” said Adam. “He had a lot of tests, including genetic testing, which revealed the condition.

“At the time Muscular Dystrophy was new to us. We did the research but there wasn’t a lot out there.”

Krystian became confined to a wheelchair when he was eight-years-old and shortly afterwards, the family discovered our hospice.

“When we found out about Rainbows from medical professionals and first heard the word ‘hospice’, to be honest, we didn’t want to go,” said Adam. “We just didn’t know what to expect but when we did go, we just couldn’t have imagined it in that way. We thought it was amazing. The staff, the people and the doctors were just so amazing.

“For Krystian’s first stay, myself and his mum and his younger brother, Alan, all stayed with him in the family accommodation. After that visit, he said he wanted to stay on his own, he says he doesn’t need us. He has loved Rainbows from day one. He always has a fantastic time.

“He loves the staff and loves the other young people who are there. He takes his mobile with him but I can ever get hold of him because he always leaves it in the room as he is too busy! The range of things he can do is great and he gets taken out on trips as well.”

Alan also benefits from the Sibling Support Services we provide. “Alan also loves Rainbows and it is great for him to do things,” said Adam. “They both particularly love the Christmas party and we can’t miss that or it would be a tragedy.”

Adam admits it is physically hard caring for Krystian, having to lift him to dress him and move him. Another reason that our charity is so important for the family.

“Krystian does understand his condition but he tries not to think about it and he tries to get on with life,” said Adam. “He has to live with it and he doesn’t like to cry. Rainbows is a huge part of our lives and we hope people can help the charity and help families like ours.

“It was absolutely shocking for us to have this happen to our son, but we don’t let it stop us from doing anything. We make memories every day and enjoy life every day.”