Children afflicted with Sanfilippo Syndrome are missing an essential enzyme that breaks down strings of a complex body sugar called Heparan Sulfate.
The partially broken-down sugar, or mucopolysaccharide, accumulates in the brain and the body’s cells and tissue causing progressive damage. The storage process affects children’s appearances, bodily functions and development.
From an early age, up until the end, they depend upon special needs and the love and support of family and friends.
A Sanfillippo child appears normal at birth and seems to develop normally for the first year or two, but as more and more cells become damaged, more symptoms seem to appear. Eventually, the build-up of Muccopolysaccharides will cause hyperactivity, sleep disorders, loss of speech, mental retardation, dementia and finally death. Life expectancy for a child with Sanfilippo Syndrome is between 10-15 years.
Touched by this family's plight, their family, friends and colleagues have decided to join together to try and help young Caitlin enjoy her brief life.
The aim of the appeal is to generate enough funds to allow Caitlin and her family to visit Disneyworld in Florida, while they still have enough time to share the moment as a normal family. (Caitlin loves Disney characters). Additional funds will be used to adapt their family home and to make Caitlin's life more comfortable.
We are organising many fund-raising activities to achieve this and ask sincerely that you help us achieve our objectives.
If you would like to help by contributing financially, or by donating gifts or services that could be used as part of the fundraising activities, please contact Paul Ward, C/O Hydrapower Dynamics Ltd, St Marks Street, Birmingham, B1 2UN.
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