In a heartfelt and moving blog, Tim Berry, who works on the bar at Lighthouse, explains why his nine-year-old daughter Greta is determined to overcome physical pain and conquer her fear of heights in a special charity challenge that is dear to them both…
Greta is recovering from a rare bone disease called Perthes Disease. It affects one in every 10,000 children; I had it as a child in the early 1990s and spent three months on my own in hospital, followed by three years on crutches.
Now, she too has spent the last three years living with the condition after being diagnosed at the age of six. Little is understood about the disease and the cause is still unknown. Basically, the blood supply to the hip bone is temporarily cut off for reasons unknown (and unforeseen) causing the hip bone to die and crumble away.
Greta had an operation to secure the hip bone and spent six weeks in a full body cast, missing a whole half term of school. She then had to use a wheelchair for two years. Thankfully, the remaining bone is now growing normally and she is walking again.
Being the fighter that she is, Greta now wants to climb The O2 in London in aid of the Perthes Kids Foundation, a charity that does excellent work in making children with Perthes Disease feel a lot less isolated. It runs annual camps for children with Perthes Disease, where kids come from all over the UK to spend a week together and have a chance to feel normal for once. Greta says it’s the highlight of her year!
I wish there had been something like this back in 1993 – I was a grown adult before I ever met someone else with the condition. Greta other Perthes survivors simply wouldn’t have the opportunity of going to camp without the good work that the Perthes Kids Foundation does. It really means a lot to her to have a group of friends who don’t see her disability as a novelty; who don’t ask “What’s wrong with your leg?” every day; or who don’t hassle her to be the friend who gets the chance to push her in her wheelchair or ‘have a go’ on her crutches.
For one week of the year, she gets to feel like everyone else and not miss out on activities that her peers are doing.
Greta would be very grateful for any donations to her charity, however small, through her JustGiving page.
