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Jeremy's Motor Neurone Disease Fund

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Could life get anymore exciting then this? Jez and I have been planning our dream wedding since April last year when he proposed on a holiday in Vietnam. Church booked with a reception venue sorted – marquee, dresses, suits, band, food, flowers etc all sorted. 6 weeks to go so all final preparation begins to start and…………the devastating news from the consultant ……..Jez has Motor Neurone Disease.

We have tried to stay positive and get our heads round it, but weren’t prepared for the rapid deterioration that has occurred in just two weeks since the diagnosis. Jez has spent 10 years as a therapeutic radiographer supporting many patients through cancer which is devastating but to be hit with MND for which there is no treatment available is a cruel blow especially when his Mum died from it 18 years ago. He is struggling to speak, finds it difficult to eat and drink and cant stand or walk for any great length of time. We are all praying that he will be able to walk down the aisle without needing his wheelchair and say his vows clearly on 11th August .

So we will start our married life as Mr and Mrs Appleton in 4 weeks with many dreams shattered. All our travel plans have halted; we can’t stay in our beautiful home - it has 3 flights of stairs which Jez can’t manage. We need a single storey dwelling that is wheelchair accessible as soon as possible. Easier said than done. Time is very short but we have come up with a solution that can be done quickly but ………….. we need to raise £100,000 to buy a temporary lodge. We are hoping that we can get this funded and erected by September – a big ask we know but we have no other option.

Having this home would mean the world to us both. This is far from what we dreamed of as Mr & Mrs, but at least we can remain independent and make memories as a married couple in an environment suitable for Jez's needs with the support from our family close by.

Any donation no matter how small will make a huge difference for us so thank you so much for your support.

Now let me tell you more about my amazing man!

Jez is the love of my life and has always lived life to the full. He loves music, film, footie, and travelling. He has always been a motivated, friendly, cheerful guy with an awesome sense of humor and a willingness to put himself out to help other people; he has had such a positive impact on so many people over his years – especially me!. After his mum passed away from MND, he knew he wanted a career change that would mean he could care for people and help them in their time of need. He re-trained as a therapeutic radiographer to give radiotherapy treatment to cancer patients; which he has been doing for over 10 years, both in North Wales, where he met me whilst at Uni; and down south, when we moved back to my home county, Devon.  

Having always had a clean bill of health, when he had a tickly cough and started experiencing problems with his speech about 3 months ago, we put it down to tiredness and stress. Having recently started a new job and been planning our dream wedding, we've had a lot on! However, with 15 years’ experience in the NHS between us, we knew that when rest didn’t see any improvement, it was time to see our GP and within three weeks we saw a Neurologist for various tests and scans and within a week the bombshell came -Jez has motor Neurone Disease.

It’s now been three weeks since this diagnosis and things change daily but no-one can tell us exactly what will happen over the coming months so we are taking each day as it comes, making the most of every situation and counting our blessings in the form of family and friends. Although we've gone from planning to travel the world for six months, to planning a weeks holiday in the Llyn Peninsula, Wales, we are still very excited for the time we have left together and precious memories we will be able to make.

Jez’s speech is more slurred, his muscles are wasting away, he is fatigued, his mobility is reduced, breathing strenuous and twitches continuous. All of this means that day-to-day living is difficult in our current home. The stairs make it inaccessible; the bathroom does not enable him to wash properly; the kitchen is unusable by him and he cannot sit in the garden due to access issues. So, I am carrying out most daily tasks for him – getting him up, moving around, showering, dressing and making food which is very tiring for me.

We need to move to a one storey, purpose built disabled home as soon as possible. It will be open planned, accessible, have a wet room, a wheel chair friendly kitchen and every aid required for independence. There is room for future adjustments that may be needed when Jez is unable to move or talk. We will also have some support close by to help me as Jez's condition progresses and his disabilities mean he is unable to do anything.

Due to the speed at which Jez's condition is progressing, we need to make this move quickly and be in our new home by late summer to ensure that he can maintain a good quality of life! However, the facilities needed come with a big price tag! And we are calling out for help! Every penny will help our cause if you can spare it. It will mean the world to us to be able to maintain a level of 'normality' at the start of our married life.
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Donations 

  • James Jess
    • £45
    • 6 yrs
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Organizer

Kim Balsdon
Organizer
England

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