Parents in appeal to save daughter from wheelchair

Caoimhe Duffy is five years-old and needs an operation her loving parents can't afford - just so that she can have the hope of walking one day. Cannistown NS junior infant Caoimhe was born 11 weeks prematurely in Temple Street Children's Hospital. As a result of complications, she later developed cerebal palsy and is unable to stand on her own or walk without assistance, has to wear leg splints and needs a wheelchair when going any distance. Her parents, Navan residents Linda and Feargal Duffy, are now fundraising to send Caoimhe to America for a life-changing spinal operation called selective dorsal rhizotomy. The operation costs €50,000 and will result in her having much better balance, dramatically reduce the spasticity in her legs and eliminate the need to wear leg splints on a daily basis. An account has been set up in Caoimhe's name in AIB in Navan and is now taking donations. But time is running out as Caoimhe, who is six this year, should have the operation before she turns seven for best results. "The operation will allow her to independently get around with a walking aid but, without the operation, it is likely she will be permanently wheelchair-bound from the age of 10. The opportunity this operation offers her is phenomenal and affords her the life-changing opportunity to lead a more normal life," according to her parents. "Caoimhe's form of cerebral palsy is spastic diplegia, which causes high tone (tightness) in her lower extremities and she has trouble doing the everyday things you and I take for granted. She cannot sit up straight with her legs out in front because of the tightness. Straightening her legs puts great strain on her hips which, in turn, causes her tiredness and distressing pain. "In Ireland there is very little help for children with cerebral palsy. A lack of resources means essential services, such as physiotherapy, are limited and she would be lucky to receive it once a month." Determined Caoimhe has beaten her health problems before. After spending her first six weeks in hospital, she returned just three months later for heart surgery to correct a faulty valve and she also had a hole in her heart. She was, however, then diagnosed with cerebral palsy - when she was a year old - and for the following year attended the Central Remedial Clinic in Clontarf for physiotherapy and occupational therapy. She has been using a walking frame and wearing leg splints since then and now attends Enable Ireland in Navan. "She's doing excellently in school but as Caoimhe gets older, her muscles are getting bigger and tighter. She has had five courses of botox injections and initially they worked really well, significantly reducing the spacticity in her legs. A course would last about six months but as she grows, the effect of the botox wears off more quickly. So in February, she had both her legs casted for six weeks to stretch her muscles and prolong the effects of the botox injections. Again, this has worked really well but it is only temporary," said Feargal. "She hates the wheelchair. Hates it. There might be 200 kids and she's stuck in one space," added Caoimhe's mum, Linda. "She's six this year and becoming more aware. A lot of kids now are asking when are Caoimhe's legs going to get better, so as she grows it gets harder. Caoimhe's got no hope of using crutches but with the operation she will." "Life in a wheelchair permanently from age of 10 is what she's facing," said her dad. The US doctor who will perform the operation is based at St Louis Hospital, Missouri. Operations of this nature have begun at a hospital in Bristol, England, but the first ever operation only took place four weeks ago. "They are only starting out. We could apply to go to Bristol but I want someone who's done this 2,000 times; he's going to be working on my daughter's spine," said Linda. Still seen as experimental in the UK, there will only be nine such operations this year, "so the waiting list for the UK is going to be huge". If Caoimhe has the operation, her regular need of physiotherapy will increase to five times a week. "The physios and occupational therapists are brilliant, but the problem is getting an appointment. You could go five or six weeks without any physio. Caoimhe needs physio once a week, maybe twice, and the physio we have is split between Navan, Trim and Dunshaughlin as well," said Linda. "She's a brilliant physio but just stretched. We can't split her into three," added Feargal. "The op is straightforward if you reach your target but getting the follow-up support is just impossible here. The support isn't there, the services aren't there anyway to support something like this. But we're not thinking about that just yet." Her parents said all they are thinking about at the moment is getting the money for the operation. After the operation, Caoimhe will need physio five times a week, whether it is swimming or riding (the little girl rides with Riding Disabled Association Ireland at Kells Equestrian Centre). "For any child with cerebal palsy, it's a fantastic exercise, horseriding. She enjoys it and she's moving with the horse so that's the best exercise," said Feargal. "As her parents, we feel we have to try and achieve this goal for her but we have no possibility of doing this on our own." To find out how to donate, or to get in touch, go to www.helpcaoimhewalk.com to see what events are upcoming for little Caoimhe.