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Neil Jones raised £250 from 10 supporters
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Closed 01/12/2018
Iʼve raised £250 to fundraise for our new charity to help the children & families of Worthing & Chichester who have the life limiting condition Cystic Fibrosis.
- Funded on Saturday, 1st December 2018
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Story
A group of parents who's children are under the care of Worthing & Chichester Hospitals have got together to set up a charity (Children's Cystic Fibrosis Fund Worthing & Chichester) to help our children & our families who live with the life limiting condition Cystic Fibrosis.
Cystic Fibrosis is a life limiting condition which clogs the lungs & other major organs with thick sticky mucous. This generally causes recurrent chest infections and each infection in turn irriversably damages the lungs. The digestive system also suffers meaning they are unable to digest fat properly and so take medication with every meal & drinks that contain any fat. The median life expectancy is 41yrs old with over half of those people not making it to 25yrs of age. People with CF at the very least spend 2+ hours a day on treatments of nebulizers, medications & chest physiotherapy and spend lots of time in hospital for admissions and clinics.
We aim to support our families by having a strong community of people that are able to freely chat to each other. Either via social media or regular meet ups. Newly diagnosed parents have a point of contact with any of us. We are all CF parents so you can rest assured we've been there & done it. If we haven't experienced it yet we will likely know someone that has.
We aim to support our families financially with admissions which are a minimum of 2 weeks and usually in London so food and travel are huge expenses plus any losses in earnings.
We would like to be able to send any new parents who are going to London for a sweat test or the education days in a taxi or at the very least cover their travel costs.
We aim to work with local businesses and other charities in the area to ensure our families needs and dreams are met to the highest possible degree.
As a group of parents all with children with CF we feel we're well placed to help other families in the same positions as us.
Updates
1
- 7 years ago
Neil Jones
7 years agoShare this update to help us raise more
Neil Jones started crowdfunding
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Supporters
10
Trevor Ticehurst
Dec 20, 2017
From Trevor, Liz and Kathryn Ticehurst
£20.00
Terri McDermott
Dec 20, 2017
For all of our CF warriors!
£30.00
LEIGH JONES
Dec 19, 2017
£30.00
NEIL JONES
Dec 19, 2017
From a family friend. Xxx
£40.00
Jane Roberts
Dec 19, 2017
From one CF parent to another, hope you raise lots xx
£10.00
Jennine Macey
Dec 18, 2017
Hugs and love xxx
£10.00
Suzan Brady
Dec 18, 2017
This would have been Xmas card spends but we think it’s better off here xxx
£30.00
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