Hi, wondering if any SDR families who had to fund raise (so the SDR operation for their child becomes public knowledge rather than a private family issue) can help with some advice? Im getting worried how to handle a situation that I can see developing. Sorry about the long post but dont know how else to explain easily. We started fund raising, via uk charity Tree of Hope earlier this year as we take Jessica to the Bobath Centre for CP in London, and if Jessica is found viable by Dr Park for SDR we will need to raise the funds for it. My brother set up a website to explain the overall aims of the fund raise - to help Jessica reach her full potential for movement via intensive therapy blocks and also the possible SDR op. So far I have explained to Jessica (just turned 5 years old) in simple terms the need to fund raise to go to Bobath as its lots of money and we can not afford it by ourselves. She seems happy with that information, she loves going to Bobath and playing with all the therapists there. The problem I have is that I have not yet mentioned to her at all the SDR operation. We really dont want her to think about having an operation that may never happen or the pressure of even knowing about it just yet. But Im now worried what other kids getting involved in the fund raiser events may say to Jessica as their parents could be telling them they are helping to raise money for an operation Jessica or so Jessica walks. Some of the children getting involved in a sponsorship event are from her class and school. We will also probably get some local press attention soon, think likely in next couple of week. Again we will be saying we want her to fulfill her potential for movement via intense blocks of therapy and possible sdr op., but it could come out in press about main thing being fund raise for the SDR operation. My questions to SDR parents who are fundraising/ have fund rasied is how did you deal with this type of situation? If you had a young child how far ahead of time did you explain the concept of the SDR operation and in what terms? Have you any advice on how I can handle the sponsorship/kids in my daughters class situation that is developing in best way possible? The last thing I want is Jessica to be psychologically be affected negatively by what we are trying to do to help her. Advice or information on from other parents who had to get a public profile to help their child dealt/deal with this issue or type of issues gratefully received. Thanks
Posted on: Thu, 20 Mar 2014 05:45:15 +0000
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