The Alex Camwell Tribute (A.C.T.) Fund was set up in 2009 by Debbie and Ian, who lost their son Alex to a rare genetic disorder called Spinal Muscular Atrophy (SMA) Type 1. Alex was six and a half months old when his parents were given the devastating news that Alex had SMA. To Debbie and Ian SMA was baby milk.
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.
