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Kayley Sings
Mammy says: Hi everyone. Welcome to the website for our 6yr old daughter Kayley who we hope to bring to America, to undergo a procedure called Selective Dorsal Rhizotomy. Kayley was born on January 28th 2004 at full term following a very quick labour of 2hours. I was not monitered with fetal heart monitering during the labour and unfortunately the team at the hospital did not know that Kayley was in huge distress. It was not until the very last minute during delivery that they realised something was really wrong and finally attached the fetal heart moniter to me, discovering that Kayleys heart beat was pretty much non existent and that she was in trouble. The cord had been wrapped around her neck, for how long we still do not know. She arrived into the world without that lovely healthy newborn colour, non responsive and as the hospital notes said flatline She 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. At 5mths I took her to a paediatrician who referred her to Temple Street Hospital. Eventually at 18mths after an MRI scan she was diagnosed with Periventricular Leucomalacia which in laymans terms is damage to the deep white matter of the brain which in turn was the cause of her Cerebral Palsy the type she has is Spastic Diplegia.Spastic Diplegia causes Kayley to have high tone (stiffness/tightness) in her lower extremities. For this reason she has trouble doing the simple things you and I take for granted.She cannot stand independently or in turn walk without assistance. She uses a K-walker to get around and at home tends to get around the place by crawling.Despite this she has more determination than anyone I know.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.Recently she found her own unique way of using the bathroom by backing herself and hooshing herself up onto the toilet. . before this she always needed a hand to be lifted up and down.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 cant sit up straight with her legs out in front like you and I, and because of this the position puts great strain on her hips in turn causing them to be painful.In Ireland there is very little help for children with Cerebral Palsy. 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 2years for our child to be given a wheelchair and she was nearly 4 before she was given the chance of assistive walking with a K-walker.We started some research and came across Selective Dorsal Rhizotomy (SDR)More info on this site:http://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htmOr by clicking the button on SDR info below
Me, By Kayley
Dad's words Kayley is a very bright, fun-loving child. She's also a very determined one! She's gotten stronger over the past 2 years especially, and continues to work extremely hard at her physio. Recently it's become much more evident that she feels left out because of her condition at times. When it comes to parties, or just playing in the school yard. Not because anyone omits her from play, she's very popular with the other kids :) - But she asks every now and then "Why can't I walk and run like the others?" - This is heart-breaking. What can we say to that? E50,000 is a monstrous amount of money to us. We knew it would be a very tough journey and we would need a huge amount of help and support along the way. For the most part, people have been very supportive and kind. We've received donations from families not much better off than ourselves. We've received donations from strangers online after they seen us on tv3, or came across the Facebook page. This is wonderful, and we greatly appreciate every single donation, no matter how great or small. I think we will make it in the end, there is no such thing as failure in our minds. We have to do this for Kayley, her happiness and well being is worth so much more than the amount required. And if people continue to be so generous, we will get there, and we will, together with your help, give this little girl the chance to do receive the gift of something most of us take for granted. Thank you for reading, and thank you for your support and help. Keith Gaule.
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