Friday, 7 November 2008

Caitlins Dream


Sanfilippo Syndrome (MPS III) affects 1 in 25,000 children. It is a fatal disease that has no treatment or cure and cannot be regressed.
One such Child is Caitlin, aged 3, daughter of Ben and Emma and sister of Chloe.
Children affected with Sanfilippo Syndrome are missing and 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 tissues causing progressive damage. The storage process affects children's appearances, bodily functions and development.
A Sanfilippo child appears normal at birth and seems to develop normally for the first year or two but as more and more cells become damaged symptoms begin 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 to 15 years.
From an early age, up until the end, they depend upon special needs and the love and support of family and friends.
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 send Caitlin, her parents and sister to Disneyworld in Florida while they still have enough time to share the moment as a normal family. 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 to achieve our objectives.
If you would like to help by contributing financially please use the link above, or by donating gifts or services that could be used as part of the fund raising activities please contact Paul Ward C/O Hydrapower Dynamics Ltd, St Marks Street, Birmingham B1 2UNE-Mail: mailto:pward@caitlinsdream.com?subject=MessageTelephone: 0121 452 8307 We invite you to explore our website to learn more about Caitlin and our efforts to help her and her family


2 comments:

Apeface said...
This comment has been removed by the author.
Naomi said...

My heart goes out to you. I wish that I were financially able to contribute something, but I'm a struggling single mom. They don't have anything like a Wish Trip that would help you take your daughter on a dream vacation? Or am I behind and you already made it there? Either way, your family will be in my thoughts and prayers. I found your blog because I was reading about another child with San Filippo on a Caring Bridge website and I decided to google San Filippo to find out more information. Just know that one more person will be praying for you. Take care.