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Seaford College DW Kayaking Team

Seaford College DW Kayaking Team is crowdfunding

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£7,700raised of £75,000 target by 142 supporters

Weʼre raising £75,000 to help fund a gastric pacemaker which is not available on the NHS so Ellie can get to America where there are further treatments available

21 days to go

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Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.

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Story

The Seaford College Kayaking Team is paddling 125 miles from Devizes to Westminster to help Ellie raise £75,000 to get her to America where she can have a gastric pacemaker fitted as well as raising awareness for gastroparesis & POTs

Ellie is currently still not able to take any food by mouth and relies on pre-digested medical feeds supplied by the hospital to maintain her weight. The risk of her deteriorating increases the longer we leave her treatment, yet she is very keen to not have her feeding tube back. We are desperately hoping to be able to get her a gastric pacemaker which is no longer funded by the NHS in the hope it will help her stomach contract, therefore allowing her to eat.

Ellie has created this video in the hope to raise awareness of her conditions - gastroparesis,POTs & potentially Ehlers danlos syndrome hypermobility type. But also to explain what she has been going through. Many people have no idea she is even unwell, especially now her feeding tube has been removed.

She has numerous appointments and further tests over the next few months and will be posting updates as results come

Please help get Ellie eating again!

*Any excess money raised will be donated to research into gastroparesis.*

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Updates

2

  • Seaford College DW Kayaking Team2 months ago
    Seaford College DW Kayaking Team

    Seaford College DW Kayaking Team

    2 months ago

    Ellie’s mother is in touch with an American mother whose daughter (with very similar conditions to Ellie) is undergoing a 12 week IV Immune globulin trial with the Mayo Clinic in the States; she has just heard from the mother that, after 4 weeks, a gastric emptying study showed a completed normal result and is now awaiting to hear if the small bowel improves over the coming weeks. There have been several studies published showing high success rates with the therapy but sadly is not yet available in the UK.

    Share this update to help us raise more

  • Seaford College DW Kayaking Team2 months ago
    Seaford College DW Kayaking Team

    Seaford College DW Kayaking Team

    2 months ago

    Ellie is still in hospital and likely to be for some time; she continues to be unable to tolerate feeding through the j- tube which has led to her, after more weight loss, now being put on TPN – total parental nutrition (being fed through the veins). A recent test showed that the small bowel is now affected as the nerves/muscles are not working correctly to coordinate the contractions in the normal way. She is being transferred to Southampton Hospital Intestinal failure unit for on-going support which may well lead to her being on home TPN.

    Share this update to help us raise more

3 months ago

Seaford College DW Kayaking Team started crowdfunding

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Page last updated on: 5/17/2019 17.53

Supporters

142

  • Juliet Bohun

    Juliet Bohun

    May 17, 2019

    Well done all of you!

    £30.00

  • Gilles

    Gilles

    May 10, 2019

    Well done guys!

    £10.00

  • Anonymous

    Anonymous

    May 9, 2019

    What an amazing achievement. It was so exciting watching you all finish at Westminster Bridge. Well done Ben and Barney and all the Seaford team, and well done all the coaches and supporters too.

    £50.00

  • the Bramsden

    the Bramsden

    May 9, 2019

    Well done all!

  • Anonymous

    Anonymous

    May 4, 2019

    Congratulations barnaby and team for a fantastic effort

    £100.00

  • Anonymous

    Anonymous

    May 3, 2019

    Amazing achievement Zoë & Fliss and the rest of the Seaford team. W&P A&R xx

    £100.00

  • simon parsonage

    simon parsonage

    May 3, 2019

    Well Done

    £25.00

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