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peter conlin

Fundraising for MPS

Fundraising for The Society For Mucopolysaccharide Diseases (The MPS Society)

raised by 9 supporters
  • Event: Fundraising for MPS

The Society For Mucopolysaccharide Diseases (The MPS Society)

We support affected individuals & families to raise awareness of MPS diseases

Charity Registration No. 1143472 and Scotland SC041012


Thank you for visiting my fundraising page.

If you know me then you are bound to know about my son Ben.Ben is 5 and has MPS in lots of cases this is a fatal illness.

I've done it. A year without alcohol (2006), no beer on Christmas Eve or News years Eve, not even Christmas pud or white sauce because they had brandy and sherry in them. I still have not had an alcoholic drink because we're trying to get a brewery to sponsor my first drink in a year. Christmas Eve I was too busy taking Ben to the hospital because he started having more problems with his 'shunt' but he was allowed home in time for Santa. We were also on BBC Radio Cleveland talking about MPS and featured in the Northern Echo and Evening Gazette.

Ben was recently experiencing some other difficulties which had resulted in him needing three operations and a number of scans and medical intervention. Over October half-term Ben experienced virtually continual headaches and vomiting. Once we were transfered from the local hospital to Manchester he had the first of three operations.

Op 1 - prob into his head to check on pressure in his head

op 2 - first 'shunt'  inserted.

However, this 'shunt' was too low pressure so ben needed op 3

Op 3 - better, more variable valve fitted.

This appears to have worked, Ben appears to have coped with the whole ordeal really well and he is back at school.

His other history is as follows;

Ben was diagnosed with MPS 1 (Hurler-Scheie) on Halloween 2003. A child is diagnosed with MPS or associated disorder every 8 days in Britain.

Ben is one of the lucky ones.

firstly he was diagnosed relatively early, at about 2 years 6 months.

secondly he is receiving enzyme replacement therapy at his local general hospital. For a lot of children diagnosed with MPS there is no treatment.

Ben is making excellent progress and manages to attend a mainstream school. He is lively, noisy and very funny. He can do most things just not as well as his peers. Unfortunately Ben has recently been having severe headaches and he is expected to undergo an operation for a 'shunt' on 4th November 2006.

My family and I have received incredible support from the MPS Society and the brilliant staff at the Williink Centre in Manchester, so as a way of repaying all their hard work I decided to give something in return. Therefore, throughout 2006 I gave up alcohol. Roll on New Year

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: The Society For Mucopolysaccharide Diseases will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

So please sponsor me now! Help to find a treatment for MPS

Many thanks for your support.