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Seaford College DW Kayaking Team raised £7,800 from 143 supporters
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Closed 12/06/2019
Weʼve raised £7,800 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
- Funded on Wednesday, 12th June 2019
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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.*
Updates
2
5 years agoSeaford College DW Kayaking Team
5 years agoEllie’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.
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- 5 years ago
Seaford College DW Kayaking Team
5 years agoEllie 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.
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Seaford College DW Kayaking Team started crowdfunding
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Supporters
143
Anonymous
May 30, 2019
Well done to everyone, including the amazing Coaches and parents supporting the athletes!
£100.00
Juliet Bohun
May 17, 2019
Well done all of you!
£30.00
Gilles
May 10, 2019
Well done guys!
£10.00
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
May 9, 2019
Well done all!
Anonymous
May 4, 2019
Congratulations barnaby and team for a fantastic effort
£100.00
Anonymous
May 3, 2019
Amazing achievement Zoë & Fliss and the rest of the Seaford team. W&P A&R xx
£100.00
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