Family hope for a full ‘house’ at MND Bingo Night

Graeme Brown (29), a classically trained musician from Windygates, Fife, shares his fundraising story and explains his mother’s progression with Motor Neurone Disease (MND).

He first began fundraising in 2013 to highlight the condition and support MND Scotland in providing help to affected families.

Graeme’s mother, Susan Brown (55), is a former NHS Child Health Officer and lives with her husband of 37 years, Alan Brown (60). The family dynamic changed forever in 2013, when Susan was diagnosed with Motor Neurone Disease.

MND is a rapidly progressing terminal illness which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink and breathe unaided.

Graeme said, “Mum visited the doctors on numerous occasions complaining of dizziness and tiredness. She had a few unexplained falls, one being in John Lewis in Edinburgh on the escalators where she was left very shaken. Her GP was pretty useless with diagnosis. High blood pressure and stress were the given as causes for her symptoms. I remember going with her on one occasion and getting nowhere so I asked if it was time she was referred to a neurologist and thankfully he said yes.

“To begin with, she lost the use of her hands, then her legs. Her voice and throat functions were the last things to go. Now, she is unable to move or communicate. She occasionally opens her eyes, but apart from that, all she can do for herself is breathe.

“My dad had to take early retirement to care for Mum full-time. I visit as often as I can, but Mum always wanted my brother and I to continue with our lives as much as possible. She never wanted her sons to have to care for her personally.

“The loss of communication must be the hardest thing for her. She was very much the ‘spokeswoman’ of our family and kept us all in order! Not being able to share her feelings is very difficult for her.

“We, as a family, have to have a very selfless relationship with Mum. We can tell her how we feel, share what we have been up to, but cannot hear her thoughts or feelings. She lives through our eyes and experiences.”

Graeme’s fundraising for the charity has been supported by his fiancé, Gareth, and together the couple have raised over £6,000 to help support the services which MND Scotland provides for people affected by MND.

Gareth said, “Graeme hosted a benefit concert and took part in the MND Fun Run in 2013 and last year he skydived with one of his mum’s carers, Fiona Thornton. Personally, as a Zumba instructor, I hosted a charity Zumbathon event and my own mother, Karen Robertson, also got involved and hosted an afternoon tea party at her house. This included a raffle with lots of local businesses supporting us with donated prizes.

“The response has been amazing. We raised over £6,000 which we are so proud of and we aim to try to match that this year! As a couple we will continue to raise money to help provide those suffering with MND with as much support as possible.”

Graeme is extremely appreciative of the support that his family has received from MND Scotland and this has been a major inspiration for his fundraising efforts.

Graeme said, “I started fundraising for MND Scotland to fund the charity that had provided our family with so much support in the formative stages of Mum’s illness. It is imperative we try to find a cure for the future generation.

“We used to go to the Fife MND Scotland support group. This was a great help because we could see that other families in our local area were going through the same thing.

“Being a part of the network of MND Scotland helped us to feel like we were not alone. We also used the assisted living chalet at Oban. It was amazing to have one last holiday with Mum.”

With plenty of fundraising experience under their belts, Graeme and Gareth are now planning a charity bingo night at 7pm on 16^th September. The event will take place at Expressions Dance Studio (Old Innerleven Church), Methil, Fife and tickets will soon be available.

The couple are also, at his time, appealing to local businesses to support their fundraising efforts by donating items for raffle prizes. Any local businesses who would like to donate an item can reach Graeme at graemebrown@hotmail.com

Iain McWhirter, MND Scotland’s Head of Fundraising said, “I’d like to thank Graeme for sharing his story with us. Sharing personal experiences of MND is a great way to raise awareness of how this illness affects people’s lives, and shows the strength and courage people can have in the face of a devastating diagnosis.

I think it’s absolutely fantastic that Graeme and Gareth have gone above and beyond to organise and take part in so many events, particularly during what must be a challenging time for the family.

Graeme, his mother and the whole family can continue to count on our support and I hope that lots of local businesses get involved in supporting their bingo fundraising event in September.”

You can find out all the details of Graeme’s bingo night on his Facebook event page.