Hooray, you got here - thanks for sparing us the time. Updates below.
All change over the summer: having set up biofeedback therapy in Glasgow, the first available in Scotland, we have relocated to the North East of Scotland. We have now doubled our original target to £20,000 and are putting funds raised in the past year towards helping Mr Chris Driver (Urologist) at Royal Aberdeen Children's Hospital purchase a Urostym biofeedback machine for children with a host of muscular disabilities to have treatment locally. VERY RECENTLY, WE SECURED A FURTHER £5000 FROM THE ORCOME TRUST in West Linton AND HAVE NOW ORDERED THE ABERDEEN MACHINE. This will only be the second such machine in Scotland and aside from saving Jamie a 6-hour round trip weekly to Glasgow, it will allow many other children to try this pioneering therapy.
Thanks to you, the first machine is now up and running in Yorkhill!
Jamie has completed several 6-week programmes of treatment in Scotland and commenced weekly visits from October!
We have been totally overwhelmed by the donations and the speed with which they have come in - thank you all so much! It has been a phenomenal experience.
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The original campaign update January 2011: Speaking with Kidney Kids and Yorkhill, now that we have exceeded our initial £10,000 target in fundraising for the equipment, we will continue fundraising and the monies will be directed to the renal and urology dept in Glasgow, i.e. training of the nurses to use the biofeedback machine, ongoing high operating costs and perhaps furnishing the area the machine will be in, toys etc. The disposable electrodes which are used in each session, are expensive and to be able to fund these while the project gets off the ground is fantastic. For example, during our last visit to GOSH, Jamie needed 24 electrodes. Be assured, every little bit from here will help make the whole hospital experience better for us and the kids
We made the press too: http://www.bbc.co.uk/news/uk-scotland-south-scotland-11736657 , the Herald p9 on Saturday 20 November and p13 of the Sunday Post on 21 November 2010!
Offline donations have been flooding in too - a special thanks to West Linton Primary School for their Dress in Tinsel Day which raised £155. West Linton Cubs raised over £200 in the X-box draw.
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The Original Campaign: Our target is to raise £10,000 through Kidney Kids Scotland to purchase a machine vital in treatment for our son Jamie and others in Scotland.
Jamie was born with a urological condition which has meant several major operations at Great Ormond Street Hospital (GOSH). Unfortunately these have not been entirely successful. He is now undergoing a programme of physiotherapy and rehabilitation for which we currently have to travel monthly to GOSH from Edinburgh. GOSH has the only “biofeedback” machine in the UK which we can use and until now, the only capacity to supply dedicated urology nurses to be trained to use it.
When we first discovered in 2009 that we'd have to travel to London monthly I appealed to Yorkhill to accommodate a machine if I raised the monies to pay for it. However, at the time there was too much of a staff shortage in their renal and urology department. After seeing the benefits of biofeedback first hand at a recent training event, Mr Salvatore Cascio (Paediatric Surgeon at Yorkhill) has now identified where and how the machine can be supported in Glasgow and has asked that I fundraise for the hardware and he will supply the staff and training. In the current climate of cutbacks, I feel it is vital that we seize this opening and try to raise this £10,000 as soon as possible so that these staff are able to start providing treatment closer to home.
I am appealing to you for a donation to buy the machine for Yorkhill Children's Hospital in Glasgow which will make the difference to Jamie, to our family life and to the lives of families across Scotland. We will be able to travel much more frequently to Glasgow for Jamie to do biofeedback. As physiotherapy relies on continuous exercise, this can only be of long term benefit.
Now for the science bit – the biofeedback machine works by detecting electrical activity from Jamie's muscles through electrodes (similar to ECG surface electrodes) and translating them into different games and exercises on a computer screen. For example, if he squeezes the correct muscles we are trying to strengthen, he can make fish swim through hoops, monkeys catch bananas or spaceships shoot asteroids. Yes, clever stuff, and that is why it is so expensive.
Yorkhill acquiring this machine will help establish it as the centre of excellence for urology in Scotland. Urologists trained in new techniques at GOSH are now established there and soon the operations Jamie has had may be able to be undertaken more locally. Follow up treatment such as the biofeedback is crucial for the successful outcome of surgical procedures these children undergo. The machine can be used by kids across the country who suffer Jamie's condition, but also by a range of other children with conditions which require this pioneering physiotherapy.
Kidney Kids Scotland are a charity who raise funds tirelessly to support renal and urological patients and their families. Kidney Kids have been amazingly supportive over the past two years to us. They have assisted with a contribution to travel funds to London and products which Jamie needs but which the NHS can't provide. They are very pleased to support my fundraising campaign and are on the end of the phone with support and advice.
So, that's the case I put to you – please help in whatever way you are able – a few pounds gets us ever closer to the target.
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