It’s time to dust off your superhero suit, because Rainbows Hospice for Children and Young People needs all the heroes it can find.
The annual Rainbows Walk of Life is taking place on Sunday 27 May, as part of Children’s Hospice Week. You can walk a heroic 15 miles or a more sedate five around Leicester, starting at Leicestershire County Cricket Club. The theme is superheroes, so walkers are invited to come along dressed as their favourite. It is optional though, so if you’d rather keep your secret identity a mystery, you can still take part. Just don’t get changed in a phone box, as everyone will see you!
One hero taking part again will be Chloe Flanders of Loughborough, who has been visiting Rainbows for six years. Although she had some physical and cognitive problems, Chloe’s life was relatively normal until she reached the age of nine when life changed for the worse for Chloe and her family. Doctors gave Chloe’s parents Alison and Ian the worst news they would ever hear; their little girl was diagnosed with Childhood Idiopathic Primary Dystonia, a movement disorder that leads to painful involuntary sustained muscle spasms, involuntary movements and other life threatening symptoms. They had to break the news gently to Chloe and tell her that she was never going to get better.
Chloe had always been an active child who was full of life and smiled readily. Sadly, her muscle spasms quickly worsened and within nine months of her diagnosis, Chloe’s active life was brought to an end. Just before her tenth birthday, Chloe was forced to use a wheelchair.
Her downward spiral continued, and by the age of 12, when youngsters are planning for all the fun of being a teenager, Chloe was confined to a hospital bed for a whole year, unable to even sit up. At 13, Chloe was to endure an eight-hour surgical procedure on her brain to receive the pioneering treatment called Deep Brain Stimulation. This fortunately brought the symptoms much more under control. She now has a battery pack inside her chest which constantly sends electrical impulses to the part of the brain which controls movements to block out the signals which cause the symptoms of dystonia. Chloe has to charge this battery pack every day.
Gradually Chloe regained her strength and, through great determination, learnt to walk again with the assistance of a walking frame. However, the dystonia had caused a condition called Scoliosis, a severe curvature of the spine which affected her ability to balance and became increasingly uncomfortable. When she was 15, Chloe once again endured eight hours of high risk surgery to insert metal rods in her spine. Alison and Ian were warned that Chloe may never walk again. Three months later however, Chloe was again determinedly on her feet, and was soon walking once again with her frame.
Through all of this, and even though she’s still in a wheelchair, the one thing Chloe hasn’t lost is her beautiful smile. Her happy face can light up a room. But Chloe hasn’t let her illness stop her doing her bit for a good cause. Since coming to Rainbows, Chloe and her family have been dedicated to helping the charity raise as much money as they can. Chloe has given her time to appear on leaflets, newsletters and in newspaper articles in a bid to raise awareness of Rainbows and ultimately increase income so more children in her position can be cared for. She’s even raised her own sponsorship money by regularly taking part in the charity’s annual sponsored walk. In 2011 she got out of her wheelchair to walk the last few steps over the finish line – and that’s heroic!
If you’re inspired by Chloe’s bravery and want to help Rainbows provide much needed support to life-limited children and their families in the East Midlands then sign up now by visiting www.rainbows.co.uk/walkoflife or calling 0800 952 1133 and get that Spiderman suit off to the dry cleaners!
