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Why we are fighting Motor Neurone Disease

The HSX Antarctic expedition aims to raise funds to support the motor neurone disease association (MNDA); the UK’s only national charity dedicated to motor neurone disease care for sufferers and cure research. So why are the Antarctica team choosing MNDA as our charity? Twins, Ollie and Tom Robinson have had grandparents directly affected by MND and so have first-hand experience of the valuable work that MNDA does for sufferers and their families. Here, Ollie explains their story:

“During the course of our childhood, we would often fly, without our parents, to Scotland to spend our summer holidays visiting Jean and Robbie (grandparents on Dad’s side) who lived near Perth. We would often be travelling around in their camper, messing around with the Yorkshire Terriers (Penny and Midge) and visiting relatives in East Lothian; a time filled with so many memories. 

In 2003, not long after one of these visits did we find out that Robbie was diagnosed with MND. We were very young at the time, so didn’t have a lot of contact as his health deteriorated, but we know that MNDA offered the family a lot of emotional support. This is a disease that affects not just the sufferer, but the entire family. Tom and I were both protected from seeing our Grandad as the disease developed, to keep in our minds the good memories from years prior, of playing golf at the local golf course. We now know what a sufferer of MND goes through, as well as the sacrifices people have to make. Jean became Robbie’s carer and they moved house to a bungalow in order to make things more accessible for him. However, after a year of fighting, Robbie passed away. For Jean, this disease took away the man she loved as she watched it run its course. There was still worse to come.

As for anyone, the shock of losing a grandparent at a young age is difficult, but time moved on and Tom and I grew up. Tom joined the British Army and I started an degree at the University of Southampton and so it was all the more difficult to learn of Jean being diagnosed with the same disease in 2010. At first it was extremely difficult to be able to even contact Jean, without knowing what to say to somebody who is affected by the same disease which they saw their husband go through. Finally however, it was Jean that contacted us and we soon made the decision to head north and visit. Jean had by this stage been living with the disease for a year and moved in with our East Lothian cousins.

Jean was still talking, however her speech was slurred and she became very tired easily; so short visits were prescribed. It was great to see how her mind was still as quick as ever (she was once a fearsome headteacher) and that despite the physical difficulties, she was still laughing and joking (especially if you took in her afternoon G&T!) and great company. We were able to watch some home movies of us in the garden playing (failing!) golf and  knew that it had made Jean happy for us to be reunited with our cousins, whom it had a been 7 or 8 years since we had seen each other last

A few short months after, Jean passed away. We were both grateful for seeing her whilst she was still in relatively good health, but for the family who welcomed Jean into their home, they had seen the disease progress and deteriorate every day for a year. We want to thank MNDA for the support that Jean and those around her received, and for that reason we want to support the charity in any way we can.”

The work the charity does to care for those suffering with the disease is extremely valuable and even then, the unending quest to find a cure continues in the background. Tom, Ollie and the rest of the team will have all those that are still suffering from MND in their minds during the advance to the South Pole.

Robbie and Jean

*What is MND? MND is a degenerative disease which affects the motor neurones in the brain and spinal cord; destroying the nerves that are responsible for passing messages to the muscles. As a result, the person affected by MND has difficulties in walking, talking, eating and breathing.

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