Story about Spinal Muscular Atrophy .

About the Annabelle Rose foundation

Jan 23, 2016


Charlotte & Wayne lost their first daughter Annabelle Rose when she was just 7 months and 12 days old due to a genetic muscle wasting condition called Spinal Muscular Atrophy. Annabelle had Type 1 which is the most severe form of the condition and takes the lives of 80% of infants affected before they reach their first birthday. Every child Charlotte & Wayne have in the future has a 1 in 4 chance of having the same disease; however, since Annabelle’s passing they have been lucky enough to have had a healthy baby girl – Blossom and a healthy baby boy - Stanley.  

After losing Annabelle, Charlotte & Wayne have made it their passion to raise awareness on this condition as well as raising funds to help families that need it most. After hosting a Valentines Ball in February 2010 they had raised over £30,000 in less than 2 years for the biggest SMA charity in the UK, (The Jennifer Trust for Spinal Muscular Atrophy) it was this that gave them the push to start up a charity in memory of Annabelle.  They worked tirelessly doing small events to raise money, aiming initially to raise £5000 in order to become a registered charity.  On the 8th of December 2010 after just 10 months as a charitable organisation The Annabelle Rose Foundation for Spinal Muscular Atrophy was awarded Charity Status (Registered charity No. tel:1139272)

The Annabelle Rose Foundation aim to support sufferers of sma and their  families however we can, in line with our objectives: e.g. funding for  car/home adaptations, funding specialist medical equipment and toys, providing families with the opportunity of short holidays for those with a short prognosis (as we know first-hand the value of such things) and provide help support with funeral costs/arrangements, as well as providing emotional support for the families affected by the condition & donating to fund research

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