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A. L. Lester raised £2,720 from 80 supporters
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Closed 17/06/2023
Iʼve raised £2,720 to to buy Nenna a Hill-Rom VEST 105 to help shift secretions from her lungs.
- Taunton, Somerset, UK
- Funded on Saturday, 17th June 2023
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Story
UPDATE: A very kind stranger who has a VEST machine they no longer use has offered it to us and we are organising getting it from the US to the UK. This will significantly reduce the costs, but I have no idea by how much until the techs this end get their hands on it. There will still be costs in getting parts that aren't with it (the jacket bit in particular) and having it serviced etc etc.. And getting it here is dependent on a friend who is travelling from the US to the UK in mid-March. It's all a bit up in the air and I want to be completely up front about it. I am reducing the target amount (from £7680) to what has already been donated, until we have more information. If it doesn't work out I will up the amount again. And if it does and is less that the amount we've raised we will use any balance for future servicing.
This is a new crowdfunder to ask for specific help to buy Nenna a Hill-Rom VEST (Read about it here). It's a physiotherapy device that is used two or three times a day for twenty minutes or so at a time. It vibrates the chest and loosens secretions that the user then coughs up or has suctioned out.
Funding is not available on the NHS although Nenna's physiotherapist feels it will be useful to her and can support its use. Other parents of children with Nenna's rare condition have reported positive results. It is particularly useful for children who have advancing scoliosis, as the spinal curve means that cupping etc on the chest and back isn't as effective in shifting secretions. (It's the lingering secretions in the lungs that get infected and lead to respiratory difficulties and collapse.)
This is a very hard ask for us. It's a huge amount of money and there's no way we can afford it ourselves. It will give Nenna more of a chance though. Since her five week hospital admission in the autumn, she has been very well supported by her new overnight ventilator--she was quite unwell at Christmas and I'm sure she would have had to go in if we hadn't had that at home. However at the end of January she had a two week admission with a respiratory infection and lung collapse. It was only the fact that we could use the ventilator twenty-four hours a day that got her through it. Having this piece of kit might just tip the scales a bit further in her favour by shaking the secretions loose before they have a chance to become infected.
A little more about Nenna
Nenna has a very rare mutation of the gene CTBP1--only a couple of dozen cases are known worldwide. Sufferers have muscle weakness and are prone to (among other things) respiratory illness, which makes them life-limited. Nenna is non-verbal, fed by PEG and uses a powered wheelchair specially adapted to accommodate her scoliosis. She uses non-invasive ventilation at night to help her be less tired during the day and has intensive physio every day with chest-banging, hypertonic nebulisation and a cough-assist machine.
She is a very happy fourteen year old who likes music, books, animals, exploring outside, racing her wheelchair, throwing things on the floor and getting people to pick them up again; and of course playing on her ipad. She is also proficient in Android and can download roughly a million Baby Panda games on your phone before you've realised she's pinched it. She is our beloved younger child and a light in our lives.
About me
A. L. Lester is my pen name, and most people know me as Ally, so that's what I've gone with on here. Please contact me on ally@allester.co.uk if you have any questions.
If you would rather support us by buying our books, here's mine (queer fantasy romance, mostly) and here's Mr AL's (SFF & thrillers).
Updates
6
- 1 year ago
A. L. Lester
1 year agoContinued update... we have enough left in the pot to fund an annual service for the next two years! This takes a huge weight off our minds. Here's a final picture of Nenna being shaken in the slightly-too-small temporary vest. It was a very hot day yesterday and a 90-minute each way trip to the hospital...all in all she was very tolerant. She'd got it in to her head that she had to stay at the hospital and had a bit of a crying jag just before this was taken, but we sorted it all out.
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- 1 year ago
A. L. Lester
1 year agoFolks! Here's a final, triumphant update from the Crowdfunder! We went to Bristol yesterday and picked up a substitute machine and jacket (whilst ours is being serviced--it will be delivered here next week some time) and got some training. Thank you so, so, much to everyone who made this possible, from the wonderful Steffanie who donated her unused machine, via Nick, who brought it back from the US for us, to everyone else who contributed funds so it could be serviced and used. We wouldn't have made it without you. Here's the machine!
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- 1 year ago
A. L. Lester
1 year agoI've been waiting to update until I had some actual news about the servicing of the donated VEST unit (💜💜💜) and whether it needs any parts etc. However it's taking ages and several people have asked me where we are with it. The physio at the hospital is still waiting for a servicing quote from the UK company. They finally contacted me last week to ask for our address and confirmation we would be paying. So I'm now waiting for a pro forma invoice. Here's hoping they get their thumbs out before autumn. I can't believe it's taken so long.
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A. L. Lester started crowdfunding
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Supporters
80
Anonymous
May 28, 2023
Not much I know but every bit helps and all that x
£5.00
Anonymous
May 28, 2023
£20.00
Tracey Fisher
Mar 22, 2023
Keep well Nenna
£50.00
Anonymous
Mar 4, 2023
£5.00
Faith & James
Feb 28, 2023
Hope this helps xx
Anonymous
Feb 23, 2023
£10.00
Anonymous
Feb 22, 2023
£25.00
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