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The Annabelle Rose Foundation for Spinal Muscular Atrophy

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helping those who need it most

about the  

annabelle rose foundation

"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."

belle night

Ultimately the above is to                          'help those that need it most'

Spinal Muscular Atrophy

No Treatment

No Cure

1 in 40 people are known to carry defective gene

80% of babies with Type 1 SMA do not reach their first birthday with the majority passing away by the age of 6 months.

SMA is the biggest genetic killer of infants.

SMA results in the muscles becoming weak and atrophied.

Spinal Muscular Atrophy (SMA) is a genetic neuromuscular Condition.

 

 

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.

 

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. 1139272)