Weʼre raising £2,000 to support two very special little boys, Stanley and Benjamin. The five of us will each run 1000km throughout 2018.
- Falmouth, Cornwall, United Kingdom
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We (Mary Heard, Leila Doney, Becky Westlake, Jane Pascoe, Gail Muller) are each running 1000km in 2018 to raise awareness and funds for two very special little boys; Stanley Barnes and Benjamin Maddern. The aim is to raise a £1000 for each of these worthwhile causes.
After being born prematurely in February 2015 in Swindon, Benjamin left NICU with no known health concerns. When Benjamin was 5 months, it became obvious that Benjamin could not see. Further tests and an MRI showed that Benjamin had PVL (Brain Damage). Benjamin is now registered blind, has Cerebral Palsy and suffered from a rare form of Epilepsy known as Infantile Spasms.
All of these conditions together mean that Benjamin has Global Development Delay. He can not sit unaided, crawl, stand or walk but he is starting to find his voice! We are raising funds to help provide Benjamin with the extra therapy, treatment and equipment he needs so he can lead a life without limits. Benjamin is an incredibly loving boy and the wish for him is that one day he will smile because he can walk with his brothers and see the world around him.
In late May 2014 Stanley was diagnosed with a terminal and debilitating disease called Sanfilippo type A. Sanfilippo type A is incredibly rare, there are only about 40 children in the UK with the disease. Sanfilippo type A is a disease that effects the cells in the brain and central nervous system. Stanley’s body lacks an enzyme which would ‘clean’ the cells of sugars that build up within them. Each cell effectively dies and with it will go Stanley’s ability to do many of the things he has previously learned to do.
As a disease with no cure, the aim is to gather as much information as possible regarding what is best for Stanleys short life. The focus is on Stanleys on going life in Cornwall, to make this time fulfilling, stimulating and rich so that, in between the frequent visits to see specialists in Manchester, Bristol and Great Ormond Street in London, he will have the most joyous life that could possibly be lived.
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Becky Gail Jane Leila and Mary started crowdfunding
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Aug 1, 2018
Well done all of you stars!
Jul 18, 2018
Well done in this crazy hot Summer ladies, I am in awe xxx
May 29, 2018
You’re all amazing Xx
May 11, 2018
Well done ladies, good luck with your fundraising x
May 11, 2018
May 11, 2018
May 9, 2018
Good luck ladies x
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