|
The National Information Centre for Metabolic Diseases |
|
|
|
|
|
Galaxy Tribute Funds
20 April 1999 – 26 March 2004 We lost our beautiful four year old daughter Simône suddenly and unexpectedly in March 2004. She was a perfectly healthy little girl, until she had what we thought was a tummy upset. She never woke up from her night’s sleep. Simône was totally adored, she has two older brothers, Robert and Daniel, and was the youngest granddaughter in our large family. She had an abundance of curls and beautiful big blue eyes. She thought she was a princess and would play and talk in her imaginary little world. She loved unicorns, ballet, the moon and stars; she was a joy. We are still awaiting the results of tests, but have been told Simône shows all the signs of a fatty acid oxidation disorder (such as MCADD). We have to wait for the results to distinguish which type. If you know you have a fatty acid oxidation disorder, following a diet low in fats and sometimes using medication, you can go on to live a normal life. I have set up this fund in memory of my beautiful daughter Simône, to assist in the funding of research into metabolic disorders. Hopefully in the near future children will be screened at birth for many of the metabolic disorders and tragic losses of our children will end. Wendy Andrews (Mum to Simône, aged four years)
|
