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 Alan will be running the London 2016 marathon to raise money for the MPS Society. This is a charity very close to our hearts as our friend's son Bobby suffers from Sanfilippo disease aka Mucopolysaccharidosis type IIIA.  Anyone who has children will know how precious they are and Bobby is a very special young boy fighting this awful disease but always with a smile on his face.  We are asking everyone to read this and donate as little or as much as you can.  Thank you.

Sanfilippo is a multi organ storage disease affecting around 140 children in the UK.  It is degenerative,  causing children to lose skills as the disease progresses.  There is currently no cure and average life expectancy is 10-15 years.  Bobby has just celebrated his 11th birthday 😊 Bobby was diagnosed aged 4, a happy lively boy enjoying school.  Bobby has now completely lost his speech and is slowly losing his ability to eat having had a feeding tube placed 2 years ago.  He is also slowing down and will eventually completely lose his mobility and his last bit of independence.  Bobby suffers many ailments due to this disease these are just a few. Most recently he has started having major seizures.  He has so many hospital visits but yet is always smiling and will light up the room with his infectious smile.  Bobby has no understanding of what is happening to him, but we do.  Slowly seeing him deteriorate is heartbreaking.  The charity receive little or no government funding due to the disease being so rare.  There is a cure out there somewhere and we will continue searching and fundraising as no child should have to go through what Bobby has.

The Society for Mucopolysaccharide Diseases (the MPS Society) is the only UK charity supporting individuals and families affected by MPS, Fabry and related diseases. They give advocacy support to affected families, fund clinical trials in the search for a cure and promote awareness.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.