Vicki's page for Jennie and the amazing MND charity
Vicki Taylor is raising money for Motor Neurone Disease Association
Participants: Jennie Robinson
Story
Why have I set up this page - it isn't just another fundraiser I can promise you that. This is special to me - really special.
It is the real story of my amazing, brave, sharp, quick witted, no nonsense and wonderful friend Jennie.
Please give it a little read
Summer 2018 was beautifully sunny - unusual for Britain. That’s when I first noticed a problem. My left flip flop wouldn’t stay on my foot! Completely random problem. So I invested in some new summer shoes and soldiered on. As summer turned to autumn, I noticed that my left foot was also dropped and I struggled to lift it. A beautiful pair of winter boots sorted that, but I decided I should get it looked at. 2 Neurologists, umpteen MRI’s, 2 EMGs, blood tests, spinal fluid tests, and 18 months later, in December 2019, I was given the awful news that I had Motor Neurone Disease (MND).
As a working mum to 2 teenage boys and married to my best friend for 18 years, getting my head round my terminal diagnosis was, as you can imagine, not something I ever wanted to have to come to terms with.
Sadly for 1 in 300 people, MND is a terminal diagnosis they will have to get used to and 50% will die within 2 years of their diagnosis. It leaves people locked in a body that doesn’t work, leaving them unable to move, talk, swallow and eventually breathe.
There is no cure or treatment, but with support and funding MND scientists are hopeful that a real breakthrough could happen in the next decade.
As my disease is genetic, I’m really hopeful that there will be a cure, for my children’s sake at least.
So, 22 months after diagnosis, I’m no longer able to walk and my left arm is starting to weaken. A slow progression in MND terms - and I’m crossing fingers (whilst I still can!) that it continues that way - every extra year with my 3 boys is worth all of the pain.
As a working mum to 2 teenage boys and married to my best friend for 18 years, getting my head round my terminal diagnosis was, as you can imagine, not something I ever wanted to have to come to terms with.
Sadly for 1 in 300 people, MND is a terminal diagnosis they will have to get used to and 50% will die within 2 years of their diagnosis. It leaves people locked in a body that doesn’t work, leaving them unable to move, talk, swallow and eventually breathe.
There is no cure or treatment, but with support and funding MND scientists are hopeful that a real breakthrough could happen in the next decade.
As my disease is genetic, I’m really hopeful that there will be a cure, for my children’s sake at least.
So, 22 months after diagnosis, I’m no longer able to walk and my left arm is starting to weaken. A slow progression in MND terms - and I’m crossing fingers (whilst I still can!) that it continues that way - every extra year with my 3 boys is worth all of the pain.
So this is why I am asking for your support - Jennie and I are raising money to support this charity in funding vital research to help those suffering this terrible disease and to support their families.
As a starter for our fundraising antics, I will be running "Race to the Stones" for MND in July 2022 and there will be many other activities to support our fund raising efforts - we really want to raise as much as we can for this wonderful charity.
Anything you can give is so very welcome - no matter how small.
Thanks for reading and we will keep you updated on our progress!