10-year-old taking action to cure MND

Robert Foster, born 16th June 1925, was a civil servant all his life and lived in Musselburgh. When Darcey was just six years old Robert was diagnosed with MND, and passed away in 2015 at the age of 90.

Darcey said “At school we take part in charity events every year to help people. I asked my mummy what I could do this year and she suggested a ‘sponsored silence’. I thought she was joking because I talk A LOT! But then I thought about my grandpa and how he couldn’t speak because of MND. I thought I could help raise awareness and money for people like him but also make people realise how lucky they are to have a voice. My mummy said it was a great idea.

“My grandpa was very gentle and would talk to me about the olden days and what school was like nearly a 100 years ago. I loved his stories, although I thought sometimes he was kidding me on (I mean – having your toilet outside and war stories… REALLY?! He made me laugh and I am sad we couldn’t speak to each other before he died.”

For MND Action Week 2019, charity MND Scotland is calling on you to imagine what it would be like to have MND and to take action to end MND forever.

Darcey’s mum Angela said, “Grandpa started to develop slurring in his speech and a slowness to his eating in 2012, but it was originally put down to his age as he was so independent, in such good physical health and his mental memory was amazing. It wasn’t until 2014 that the condition was diagnosed as MND.

“It was devastating and massively impacted his confidence. This was a very independent, proud man who had never relied on anyone until this point. He found it incredibly frustrating in the beginning and then when acceptance set in, he became reclusive and withdrawn. Living alone, conversation forms a major part of everyday life and losing his ability to speak was embarrassing and isolating for him. In his final year, swallowing was also a problem, so meal times were long and he refrained from eating out socially.

“My mum (his only daughter) became his carer, living with him part of the week. We all chipped in, be it making meals, keeping company or helping out. I don’t know what we would have done without MND Scotland in terms of information, support and sourcing the tech to at least let him speak through technology. The one thing that always troubled me was the inability to make a phone call. We used to call him regularly and in the end that was not possible.

“Being trapped inside your body whilst the mind still functions, is awful. MND robs you of your independence and isolates you from society.

“He was 90 when he passed away and Darcey was nearing 7 and Cassidy, her sister, was only 3. Darcey has fond memory’s of the special conversations that they shared; ones that can captivate a young mind through the vast generational time difference. Cassidy however can only recall her great grandpa ‘talking through a computer’.

“I was very humbled by a late ‘tech conversation’ with him when he said he knew that, in terms of the disease, he was lucky.”

Darcey has already raised almost £400 for MND Scotland through her sponsored silence for MND Action Week (17th – 23rd June), and to commemorate Robert’s 94th birthday on 16th June.

Darcey said, “My teacher and whole class gave me great support during the sponsored silence, encouraging me to do well. I found it really difficult to stay quiet as I was not able to interact with the class and share my joyful thoughts. It really made me think how difficult it must have been for Grandpa. I would like to thank all my friends and family who have sponsored me, I have had very generous donations, some being from my friends parents who have lost loved ones to MND too. My school has also been very supportive….HUGE THANKS!”

Darcey’s dad, Paul said “I am incredibly proud. Darcey talks from morning to night and her voice is beautiful and expressive. Maybe I value it more because I don’t take it for granted.”

For MND Action Week we’re calling on the nation to join us and help us to not just imagine a world without MND, but to make it a reality. To donate £3 to MND Scotland text IMAGINE to 70660 or visit www.mndscotland.org.uk/imagine.