Diana Colville
Diana's Head Shave for MND Reseach
Fundraising for Motor Neurone Disease Association
Story
Well, what an amazing response! Not only have we repaid the cost of my chair, as hoped, but you have raised a significant sum towards research. If I put all your love, thoughts, wishes and hopes together, maybe we could find a cure for this disease? I attach photos of my small contribution to MNDA and hope it has raised awareness of the cruel nature of this diagnosis, it’s randomness and the lack of any constructive treatment for the foreseeable future. Please continue to be active in supporting MNDA, remembering the ‘forgotten few’ and I thank you all from the bottom of my heart for your kindness, your love and your astounding generosity.
Please continue to spread the word and let’s together find a cure.
Due to the overwhelming response to my Head Shave, I have now decided I will be sending some of the incredible funds raised to the South Herts branch of the MND Association to support people living with MND in our area and to repay their kindness in providing me with my lovely Riser/Recliner chair.
Thanks for taking the time to visit my JustGiving page.
THE FORGOTTEN FEW WITH MOTOR NEURONE DISEASE
At the age of 68, I have worked for over 40 years as a Physiotherapist in Barnet, for over 32 years in a special school for pupils with severe learning disabilities and complex conditions. I retired 3 years ago. I also worked for Barnet Wheelchair Service delivering chairs to people with terminal illness.
I continued to volunteer at school until February this year.
It is ironic that on 24th March 2020, the day after lockdown started, I was diagnosed with Motor Neurone Disease. I am taking each day as it comes and realise that my prognosis is terminal. There is no cure.
I have a lovely husband, two super sons and three wonderful grandchildren and it has been very hard to come to terms with such a bleak future. I feel like I am on death row, with an already gradual decline in my mobility, loss of independence, reliance on carers and not even a last meal to look forward to as, at the end, I will succumb to pneumonia, probably then dependent on tube feeding. I have already been offered catheterisation and the tube into my stomach, as ‘these are better fitted earlier rather than later’. I am also booked in with the local Hospice at Home and, have recently recorded my voice for when I am reliant on a mechanical means of communication.
Local services have been marvellous but this is a total shock and a far cry from the very active Physiotherapist I was only 4 months ago.
On asking my Consultant if there were any ongoing trials of drugs that I could join, I was informed that all trials have been halted due to Coronavirus.
Coronavirus has obviously been uppermost on the news coverage, but appears to have completely usurped routine hospital care and clinical trials for other important diseases. This year was due to be a big one for MND trials, which unfortunately have had to be paused due to the current situation. Things are resuming slowly but obviously Coronavirus has taken centre stage.
From my Riser Recliner chair kindly provided by the local branch of M.N.D.Association and the ‘ My Name’5 Doddie Foundation’ , there is little I can do to assist others. I can no longer bake cakes, run marathons or organise fundraising events so have decided that my best fundraiser for urgently needed research into this very cruel disease is to ‘Shave my Head for MND Research’. The main topic of conversation during the Pandemic has been length of hair, split ends, grey roots and looking wild. For those of us in my situation, I am sure our hair has not been a priority. I will update this JustGiving page to show off my new look, hopefully once I have hit my fundraising target.
There are around 5,000 sufferers in the U.K., but still no effective treatment for this debilitating terminal illness. It will be too late to help me, but hopefully will help future generations who contract this very cruel disease.
We don’t have time to waste. Every day counts.
Yours in anticipation,
Diana Colville
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