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Weʼre raising £1,000 to Fund our families living with Cystic Fibrosis in everyday life and crisis situations.

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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.

2 of my own children Immy & Zach both have Cystic Fibrosis.

Immy was diagnosed age 4 after Zachary was diagnosed at birth. Every year since diagnosis Immy has been an avid cake sale holder and loves nothing more. She does it mostly by herself with her friends, Neil & I mearely set the date, advertise and very little in the way of setting up. She's a determined lady!

Anyway It's fast approaching that time of year my little superstar hosts her cake sale again along with her wonderful friends. Please help our incredible little people help our local families living with #cysticfibrosis This year is extra special because this year it's in aid of our very own charity that we set up this year Children's Cystic Fibrosis Fund Worthing & Chichester.

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NEIL JONES

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    6 days ago

    NEIL JONES started crowdfunding

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    Page last updated on: 8/10/2018 9:19 PM

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      NEIL JONES

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