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Amy Whitby

Amy Whitby is crowdfunding

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£11,849raised of £11,759 target by 329 supporters

Weʼre raising £11,759 to Fund a gastric pacemaker to potentially save my Nephews life, due to a rare incurable illness called Gastroparesis. Please help if you can.

Hertfordshire

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Story

https://youtu.be/ql6LmQTmLI4

Just under four years ago my nephew Chris started to become sick, with loss of hearing, severe weight loss and vomiting, we realised something was seriously wrong. After many tests specialists confirmed that Chris has a rare condition called Gastropariesis, this causes the stomach muscles to become paralysed, so prevents food and liquids from staying down. Chris being as unique as he is has had the added bonus of pockets of air on his brain, caused by significant weight loss and a shrinkage of tissue, which now specialists have confirmed the two conditions are linked.

Chris now 36yrs has always been a healthy 13.8 stone and loved his food, he now weighs a dangerously low 8.6 stone and still dropping. He is unable to eat or drink without vomiting. He was fitted with a tube that was fed through his nose, this caused discomfort and embarrassment, he now has a PEG-J feeding tube in his abdomen, and a rucksack that carries pumps, tubes and syringes, this tube has to be changed every 3 months which costs the NHS £8,000 every time, often the tube comes out of his small intestine where he is fed and so needs changing on an even more frequent basis. Over a 12 month period Chris is costing the NHS approximately £164,000. He often jokes that if he was a horse he'd be glue by now.

On top of all of this all his feed comes in plastic bottles, his syringes are plastic as are his feeding tube attachments. He will use 265g of plastic per day, 967kg per year and over a 10 year period (the life expectancy of the pacemaker) that’s 9.672 tons of plastic!

Chris's surgeon Mr Kadirkamanathan has now agreed to fit a Gastric Pacemaker, but the NHS will not fund this, which is crazy considering how much the annual fee is at present to them. The pacemaker and aftercare will cost 17,357.58 and the surgeon will work for free and supply his own Anaesthetist, due to disagreeing that Chris has to fund this procedure himself.

Chris has remained positive throughout this journey, and is an inspiration to all others that suffer with this condition, he is a loyal family man and has a special bond with his beloved wife Lorraine and son Christopher. There has been times where he has felt really down and felt like giving up, but the love of his family has kept him going. We are now in the process of raising funds to better Chris's life and enable him to be pain free, socialise and eat again. We have lots of fundraising ideas that will take place locally, Chris is also going to contact local companies, radio stations, the press and our local MP. If you would like to join us in any events please keep posted for upcoming dates, if not a donation would be very much appreciated however small.

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Updates

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  • Amy Whitby2 months ago
    Amy Whitby

    Amy Whitby

    2 months ago

    On Sunday 30th June we did a 25k walk through London, walking over 16 iconic bridges, we were joined by pearly Kings and Queens, Chris's surgeon and even Chris himself. This was to raise awareness for Gastroparesis, any funds that were raised will now go to others that need to raise money for a Gastric Pacemaker. Thank you for an amazing day of support xx

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  • Amy Whitby3 months ago
    Amy Whitby

    Amy Whitby

    3 months ago

    Another tube fitting at the #royalfreehospital. My #gastricpacemaker #pacemaker is working fine but at some point Chris may need to take on more nutrition/calories. Another £8000 to the NHS! My 8th tube this year! A huge cost to the NHS yet the #pacemaker #gastricpacemaker would only cost the price of 2 tube changes and they won’t fund it. #ridiculous thank you to all those that have supported me. Almost back on the mend. #starvingforacure #cronicpain #gastricbypass #gastroparesis #gastroparesisawareness

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  • Amy Whitby3 months ago
    Amy Whitby

    Amy Whitby

    3 months ago

    So after 3.5 years of not been able to keep and food or drink down I was finally able to eat Marmite on toast and some OJ. The best thing ever! Like ever ever. Today is the start of my new life. Thank you each and everyone of you that helped me eat this today. Ive smiled throughout this illness (sometimes just to not let my true feelings show) but this one is one saying I’ll never forget what you have all done for me. 💚🙏🏻 💚 #gastroparesis #statvingforacure.

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6 months ago

Amy Whitby started crowdfunding

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Page last updated on: 7/12/2019 18.59

Supporters

329

  • Shelby Burrows

    Shelby Burrows

    Jul 5, 2019

    £10.00

  • Reg

    Reg

    May 31, 2019

    Hope he gets well soon

  • Noble

    Noble

    May 14, 2019

    Sorry for late donation. So glad the target was reached. Good luck with it all Chris. Let's catch up soon.

    £50.00

  • Anonymous

    Anonymous

    May 13, 2019

    Well done for completing the run! Shirley x

    £20.00

  • Anonymous

    Anonymous

    May 13, 2019

    Hoping you get your operation sorted soon Chris! Amanda's Mum x

  • Anonymous

    Anonymous

    May 13, 2019

    Well run Amanda and good luck Chris for your operation! Maureen M

  • Anonymous

    Anonymous

    May 13, 2019

    £50.00

Amy Whitby

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Amy Whitby

Amy Whitby

Hertfordshire

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