Finding information about SMA was extremely difficult as the Doctors and Nurses in Glenfield Hospital, Leicester, knew very little. So little was known that when the shocked parents asked to have Alex's organs donated, many phone calls had to be made, and only one team of surgeons from Oxford agreed to do this.
Alex lived for 20 days after his diagnosis and died on 6th May 2009, aged 7 months and 1 day. During these last few days Alex was transferred to Rainbows Children's Hospice in Loughborough.
Alex was a wonderful little boy, who enjoyed every second of his short life. He always found a cheeky smile for everyone. He was full of mischief, and loved the simple things in life. Alex never stopped talking and especially loved shouting at Anne Robinson on The Weakest Link. Alex would be honoured to know that awareness is being spread through his memory, and much needed funds are being raised."
I know it is Christmas time and we have all probably spent too much as it is, but even if it's the smallest amount it could go to helping raise awareness and be able to research this condition.
Please at least take a look at the websites and if you cannot donate yourselves I ask that you can pass on this link to others.http://uk.virginmoneygiving.com/fundraiserweb/fundraiser/showFundraiserProfilePage.action?userUrl=EverestTheHardWay&isTeam=true