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Chris Smith raised £2,380 from 85 supporters
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Closed 06/07/2021
Weʼve raised £2,380 to help Addy and her family. Addy is 5 years old with a rare terminal disease known as CLN2 Battens Disease.
- Funded on Tuesday, 6th July 2021
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Story
Addy is 5 years old. She's amazing.
She has been diagnosed with a rare, terminal disease known as CLN2 Batten's Disease. There are presently only 100 children worldwide known to have this disease.
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.
Following surgery, she will need to travel to Great Ormond Street Hospital to receive treatment every two weeks for the rest of her life, which may only be another 4-6 years. Heartbreakingly, the disease will limit her life to between early childhood and young adulthood at best.
This funding campaign seeks to help Addy and her family, (Dave, Hayley and Samuel) in supporting them in a significant financial challenge. Funds are needed both immediately and ongoing for two specific areas:
1. The Cost of Travel
The fortnightly travel from Swindon to London is an economic burden - taking away the opportunity to work on that day and costing up to £3,600 per year.
2. Move to a appropriate housing
The difficult but necessary decision to move house has been taken. A shortfall in finances has been identified and we are looking for support in plugging the gap between their house value and an appropriate next place. You can read more details about this in the campaign updates.
There are also implicated future costs for home environment adaptions and education. Alongside the emotional and practical impact on the family life, the economic strain will increase as parents lovingly take on a full-time caring roles.
This is our chance to help practically. Please be generous to a family that has always been generous to others.
Updates
1
- 3 years ago
Chris Smith
3 years agoHi Everyone, Firstly I want to thank all of you who have kindly sponsored me. We've raised an amazing amount and are closing in on £2500 I completed my ultra marathon on Saturday 19th June in 12 hours and 44 minutes. It was tough but I felt strong throughout baring a slight wobble at around 40 miles when I was tired. Peanuts, coke, sugary tea and a freddo chocolate bar helped to revitalise me. It started at Chichester race course and ended at Winchester cathedral. The South Downs Way had loads of beautiful scenery. Thanks again! Chris
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Supporters
85
Caz
Jul 2, 2021
Last minute or what!A huge well done ChrisWhat next?
Paula
Jun 27, 2021
Well done Chris!
Daniel and Caroline Pitt
Jun 27, 2021
Well done Chris, and thinking of Addy and the work at Great Ormond St Hospital.
£50.00
Sarah Y
Jun 21, 2021
Addy, you are very special, amazing and extremely brave x Chris, you have an amazing gift of helping others x you are all in my thoughts and prayers x
£33.00
Mary Woodmam
Jun 20, 2021
£10.00
Simon and Nicola Stevenette
Jun 20, 2021
Thank you for doing this for Addy. Please be assured of our love nd prayers for you as you recover !! Jolly well done Simon
Chris and Clare
Jun 20, 2021
Couldn't be prouder, what an amazing man.
£100.00
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About CrowdfundingAbout the fundraiser
Chris Smith
I am running my second Ultra marathon (Race to the King) of 53 miles in a day on 19th June this year to raise funds for the amazing Addy.