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Angela Ryan raised £5,348.5 from 147 supporters
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Closed 15/02/2019
Iʼve raised £5,348 to help fund a ventilation mask for baby Charlie Wagstaff who suffers from a rare genetic disorder. If he falls asleep he stops breathing.
- Hambledon, Waterlooville, UK
- Funded on Friday, 15th February 2019
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Story
Steve and I are hoping to help raise funds for adorable little baby Charlie Wagstaff who was born with a rare genetic disorder called Congenital Hypoventilation Syndrome (CCHS) which means he stops breathing every time he falls asleep and sometimes when he cries or even when he concentrates. We and our staff at our pub were all looking forward to meeting Sophie and Chris's baby and were heartbroken to hear of Charlies condition and can only imagine the struggles his Mum and Dad have been through. It is so rare that only 1000 people in the world have been diagnosed with this lifelong and life threatening condition, which has completely turned his Mum and Dad's life around. Charlie spent four Months in hospital before coming home with lots of equipment and carers who watch over him every night. He wears a mask attached to a ventilator every time he goes to sleep - his life support machine and his oxygen and carbon dioxide levels also have to be closely monitored to keep him safe. See links to understand more about this condition.
CCHS https://www.cchsuk.org/
& #MovingTowardACure.
CCHS Foundation cchsnetwork.org
Charlies mask is starting to cause him facial deformities, so any money raised will go towards a bespoke mask which will hopefully allow his face to develop properly over the next 6 Months. As babies grow so fast he will require a new one every 6 Months. A Doctor from Denmark will need to fly over to England for the bespoke fitting. He will need a clinical room at a hospital and the local NHS are able to provide the room and whatever else is required but it needs to be paid for. We are also holding a Neil Diamond tribute event at our Pub and hope to raise as much as we can there. Thanks every one! Angie x
Updates
5
- 6 years ago
Angela Ryan
6 years agoThanks to you FANTASTIC PEOPLE the Doctor has now been booked to come over to England in January! Steve's Neil Diamond event & the raffle at our Pub on Saturday means so far a total of approx. 7k has been raised maybe more as we are still receiving donations. Charlie will need a new mask every 6 Months, but for now we have all so far raised enough money for two masks! Chris and Sophie are overwhelmed with the generosity and kindness shown by so many kind and caring people and thank you from the bottom of their hearts. Angie xxxxx
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- 6 years ago
Angela Ryan
6 years agoCharlies Mum & Dad are ecstatic! They can now pay for Charlie's special mask which will grow with him for about 6 Months. Then another one will need to be made - babies grow so fast! There is no Doctor in the NHS who can make this special bespoke mask. If anyone knows of a Doctor/medical professional in the UK who can please let us know. His parents are hoping for a Charlie's trust fund to give this little darling poppet a better future. Yesterday was CCHS Foundation day #MovingTowardACure thank you so much kind people Angie xxx
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- 6 years ago
Angela Ryan
6 years agoIt's so fantastic how this funding campaign has escalated to the national papers! It's going to happen! There are other children in Britain with the same life threatening condition and we hope that the publicity will raise awareness see: www.cchsuk.org/ and that this organisation will be supported greatly by the generous British public. You are all helping one little gorgeous tot and his family and they cannot find the words to express their gratitude to you wonderful and kind supporters. Top people you are! Angie xx
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Supporters
147
Anna Marczyk
Dec 20, 2018
£10.00
sarah pete
Dec 6, 2018
Go Charlie!!! Can’t wait to meet u one day little man!!! 😍 so much love from all us Meriano’s (esp Leo pancake!) xxx
£50.00
Anonymous
Dec 6, 2018
Thanks for supporting Charlie and his Mum and Dad
Elissa Dolan
Dec 3, 2018
Thinking of you all, best of luck, hope all goes well. Joe's sister x
£20.00
Mike & Martina Costello
Dec 2, 2018
£50.00
Imelda & Thomas Burke
Dec 2, 2018
£20.00
Russell Guiver
Dec 2, 2018
Friend put me onto this. Glad to do my little bit. All the best to thr lad and the family too.
£10.00
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