My beautiful mum was diagnosed with Motor Neurone Disease (MND) in March 2018 at just 63 years old. MND is a degenerative neurological condition which interferes with messages being sent from the brain to your muscles, causing them to waste. It is life-limiting and, unbelievably, it is currently incurable.
To give you some small insight... this horrific illness has taken away the use of mum’s legs, her arms, her hands and she is losing the ability to even speak. Mum is dependant on us to wash her, feed her, dress her, take her to the toilet, to help her communicate - everything. Everyday.
Mum is losing the ability to eat, finding it difficult to chew or swallow. Unless she eats very soft foods or soups she often chokes when eating. In turn, this raises concerns of adequate nutrition.
The photo above was taken on Saturday 5th October 2019, the day after mum had an operation to have a feeding tube (PEG) fitted directly into her stomach. A 10cm long tube which punctures her stomach from the inside to the outside, protrudes from her abdomen to enable us to feed her liquid food.
Each day we have to give mum medicated drops under her tongue to stop excess saliva production to prevent her from dribbling.
At night mum needs to sleep wearing an oxygen mask which is connected to a ventilator. She sleeps on a hospital style profiling bed because she cannot lay flat as her weak diaphragm no longer supports her breathing.
Prior to diagnosis, mum was able to walk, dance, cycle, drive, hold a glass of wine, hold a knife and fork to eat, brush her teeth, walk up and down the stairs. Only 18 months on, she is wheelchair bound and very nearly paralysed from the neck down. MND has taken hold of her that quickly.
As you can imagine, we are all devastated.
MND may have stolen so many things from my mum and from us but it has not stolen her smile, or her positive mindset, her sparkle or her sheer determination to live, love and laugh.
The Motor Neurone Disease Association (MNDA) have been so supportive to us during this awful time with vital help, advice, resources, funding and equipment.
In the next two months I will be running 2 events to raise funds for MNDA so that they can continue support people living with MND as well as to facilitate research to one day find a cure.
Firstly, the Royal Parks Half Marathon in London on 13th October 2019, followed by the New York City Marathon in America on 3rd November 2019.
The NYC Marathon is the largest in the world and my taking part is 100% self-funded. It will be a massive personal challenge for me, and will be the 2nd marathon I have ever run (after London earlier this year which I also ran for MNDA). I have been in training over the summer months, following a plan, clocking up the miles in preparation to run the daunting 26.2 miles across New York City next month.
When I run, I run for my mum - as well as for everyone living with MND who can no longer use their legs.
Wherever you are, if you can, please show your support on 3rd November by jumping up and down for those who have lost the use of their legs, clap your hands for those who have lost the use of their arms, and cheer as loudly as you can for everyone who has had their voice stolen by MND.
I am a proud member of Team MND. I will keep on running. We are fighting for a world free from MND. I hope you will join us.
Thank you for visiting my just giving page and for any sponsorship you can give.
Sarah's New York Marathon page 2019
I will running the New York City Marathon for Motor Neurone Disease Association because my mum is living with MND
We fund care, campaigning and research to achieve a world free from MND
Charity Registration No. 294354