Navan family embarks on fundraising drive for daughter's surgery

A major fundraising drive to help a six year-old Navan girl travel to the US for life-changing surgery, which will enable her to walk, was launched last week. Little Kayley Dunne from Beaufort Place cannot stand independently or walk without assistance. She uses a special walker to get around and, when at home, tends to get around the place by crawling as she suffers from Spastic Diplegia, a form of Cerebral Palsy. Despite this, she is a bright and fun-loving little girl who is determined to live life to the full and do everything her peers do. Just recently she asked her mum if little girls with walkers could do Irish dancing, and she is determined to try! As her conditions worsens as she grows, her parents, Jacky Dunne and Keith Gaule, are hoping to bring her to the United States to undergo a procedure called Selective Dorsal Rhizotomy, which could radically change her life and make her future much brighter. It would enable her to walk with crutches and live a much more normal life, as well as reducing pain and discomfort. Her mum, Jacky, explained that her condition causes Kayley to have stiffness and tightness in her lower extremities and she has trouble doing the simple things most people take for granted. "She finds it hard to bend her legs or to get her foot on the floor and simple things like getting dressed are very difficult. As she gets older, her problems are getting worse, because her muscles remain as tight as ever, while her body continues to grow," her mother explained. Despite this, Kayley goes to St Oliver's National School, where she has many friends and even takes part in PE classes. She also loves playing with her little sister, Emily. "She has overcome many things that you and I find so easy to do, it is hard to imagine it could be so hard in the first place," says Jacky. "The tightness in her legs causes her tiredness and pain. She tends to find sitting in a W position with her legs behind her, either side of her, the most comfortable, as she cannot sit up straight, but this position puts great strain on her hips, in turn, causing them to be painful." Kayley was born in January 2004 at full-term, following a very quick labour of two hours in Our Lady of Lourdes Hospital, Drogheda. Late into the delivery, it was realised something was wrong and the umbilical cord was wrapped around her neck. Kayley was unresponsive when she was born, but was resuscitated and spent her first week in special care. "Some months later, I realised something was wrong. Her little legs tended to tighten for no reason and she seemed unable to master the early milestones such as rolling and sitting up," recalls Jacky. At five months, her parents took her to a paediatrician and, eventually at 18 months after an MRI scan, she was diagnosed with Spastic Diplegia. Her parents feel there is very little help for children with Cerebral Palsy in Ireland. "Kayley is lucky to see a physiotherapist once every month. The waiting lists for help are long and the wait for any sort of equipment is ridiculous. We waited two years for our child to be given a wheelchair and she was nearly four before she was given the chance of assistive walking with a K-walker." Because of this, they started to research her condition and came across a hospital in St Louis, Missouri, which carries out Selective Dorsal Rhizotomy (SDR). This operation involves cutting the nerves in the back that cause the abnormal tone in the legs and which will permanently reduce the spasticity in her lower limbs. If she has the surgery, Kayley's sitting and standing postures will improve significantly, her level of comfort will improve, movement will become smoother and faster and she will be able to walk with crutches. The family got in touch with the St Louis Children's Hospital in Missouri and sent scans, medical notes and even DVD footage of her movement to the medical staff there and doctors at the hospital believe that surgery will be a real help to her. "The opportunity this gives her is phenomenal. The operation is only carried out in America and it will be Kayley's one chance at having a life that little bit easier," says her mum. It will cost in the region of €50,000 and the family hopes to be able to raise this amount to bring her to America to have the operation done. They have launched a fundraising campaign and set up a website - www.helpkayleywalk.com - and a Facebook page. Jacky is planning to run the Dublin mini-marathon in June and her sister in Australia will also be raising funds over there. Keith is originally from Carlow and his family there will also be fundraising while Jacky's family and friends in Navan are to undertake a number of fundraising ventures over the coming months. They have also appealed to people to come forward with fundraising ideas and to contact them through their website and Facebook. "We feel we cannot let her down, and we must do everything to make sure that she has this chance, but we cannot do this alone. Please help us to help our daughter on her way to fulfilling some simple dreams she has in life," added Jacky. Donations can be made at Permanent TSB Account number 16886008, sort code 990615 or people can also donate via Paypal at www.paypal.ie using the email helpkayleywalk@gmail.com