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).