CHRIS - DAD, GRANDAD, UNCLE, BROTHER AND GOOD FRIEND. ⭐

It’s almost a year since our first band night to mark ’10 years without Chris’ and to raise money to help fund ethical research into vile Motor Neurone Disease. A year on and still no cure for MND – so we go again - in the year that we lost brave Rob Burrow, who along with his beautiful family and truest of friends, Kevin Sinfield, showed the world what friendship really means and opened more eyes to the cruelty of this disease. We need to keep fighting, keep raising money and raising awareness to show our support for the MND warriors battling MND. Too many more have been lost recently – Jord Pilkington, Sir John Adams, Lee Farrar - along with many others.

Chesterfield currently has the joint sixth highest number (prevalence) of people with MND in the country - although numbers will vary over time.

On Saturday 5th October, we will join forces at The Olde House, Newbold, Chesterfield to have a night of music, fun and friendship. Come along and help us make a difference.

Dad, Chris, loved a good knees up and that’s exactly what we had last year. For those of you who didn’t know Dad, he was a fantastic Dad, Grandad, brother, uncle and friend. He loved the great outdoors, travelling world-wide for a walking challenge, but always returning to his beloved Derbyshire. Following these local walks, he started returning home with cuts and bruises having tripped and fallen and we joked that if he wasn’t careful, he would end up rolling into a quarry! He was given shoe inserts to improve his gait. He then had awful problems with his back and was told he could have scoliosis of the spine. Dad’s chiropractor advised seeing a neurologist and from there on in, the brief but hellish journey with Motor Neurone Disease unravelled. From eventual diagnosis to us sadly losing Dad, was only 9 months, yet it must have seemed a life-time for Dad, with his mobility, his independence and health impacted so dramatically. Looking on, unable to change anything was awful. Mum was fiercely determined to help Dad, cooking 4+different foods at most meals to try to keep him eating. He went from completing the Inca Trail to find walking 50 metres down the road with 2 sticks a challenge until eventually moving around the house was the challenge along with swallowing his food, speaking and breathing. Dad was willing to try anything and was only the second person to have a diaphragmatic pacer fitted to attempt to help his breathing. Seeing Dad in ICU, was hard and sadly the operation brought no improvement for him. Eventually, he had to use a ventilator with a mask which he absolutely hated. Mark and I brought forward our wedding date to enable Dad to be there, but sadly he died just two weeks before.

Dad really was taken too soon. Before wretched MND, he was at the centre of mine and Richard's families, loved seeing the grandkids, was going to Hillsborough to cheer on The Owls or shout at them, exploring new countries, visiting Cornwall with Mum, saying he didn't want any more cats (but having them and loving them), enjoying a pint at pub and then along came MND.

More needs to be known about this disease, more needs to be done about this disease and this is why we go again with Band Night Knees Up Take 2! All money raised will be split between Mel Evans MND Foundation and Darby Rimmer MND Foundation, two charities which campaign endlessly to raise money to support those fighting MND and their families, to fund research and ultimately to help find a cure. Those leading the charities -Stephen Darby and his family, Marcus and Louise Stewart, Lynn Pritchatt and their supporters, are constantly finding new ways to raise money. It’s now the turn of our MND Army to help them.

Please come along and have a great night with a fantastic crowd of people. The company will be second-to-none, the music outstanding and raffle prices amazing.

Contact Lorna Jane, Richard Brail, Vanessa Gregory or Kirsty Linacre on Facebook or ring me, Lorna on 07847537558. It was a sell out last year, so don’t hang around in getting your tickets sorted. Raffle prizes to be announced soon.

THANK YOU TO ROSIE WALSH, KIAN MOSLEY, DARREN MOSLEY AND THE GB3 FOR GIVING THEIR TIME TO WHAT WILL BE AN AMAZING NIGHT OF MUSIC AND TO THE OLDE HOUSE FOR HOSTING IT!

TOM LOST GRANDAD KEITH TO MND

Grandad Keith was diagnosed with MND in 2014. He battled the disease for 5 years.

I have a lot of memories of what I used to do with him when I was younger. I used to help him a lot with farm work, like feeding cows and sheep, grass cutting, baling, cutting up wood etc.... I can remember when I was 13/14 I was tall enough to drive his 1973 series 3 Landrover and he showed me all the controls and how to drive it in the field before letting me loose in it. I can still remember he said to me, 'If you get into any trouble slow down and I'll try and jump in.' He showed me a lot of things and I learnt a lot from him. Then he showed me how to drive the tractor and eventually it got to a stage where I did a lot of the work inside the field and I'd just drive it into the road, then we'd swap round so he could drive on the roads as I was only 14.

He inspired me to get into engineering. I have a very fond memory of a time where we completely took apart a Stihl chainsaw part to clean as it had got clogged up with saw dust after cutting up lots of wood. I bet him that it would never work again. He didn't take any pictures of it - but to my amazement it went back together perfectly.

Grandad spent the few weeks leading up to Christmas one year building my Tamiya remote control racing truck from scratch so that I could use it on Christmas Day. Also every year, he would spend hours preparing a huge firework display for all the grandchildren on bonfire night - it always lasted over 2 hours and was always fantastic. Afterwards, we'd all tuck into his lasagne that was always great! We always had so much fun together and laughed a lot and I miss that so much.

Grandad was a great man and I loved all the time that we spent together. MND cruelly took him too early. I wish I could have 10 minutes with him now to tell him how I'm getting on and how he helped me start my career in Engineering.

It was fantastic to work with Tom to make our first band night so successful and I'm looking forward to joining forces again this year.

KIRSTY'S MND JOURNEY

At 14 I lost my grandad to MND in 1990 when very few people knew MND was a thing and I was oblivious to the huge impact it would have on my family and my life. Losing grandad was devastating, but I now know he was lucky to have suffered a heart attack before the MND took full hold on him to take away all that made him the man we all adored.

Years later, we got further devastating news that my aunt had received a MND diagnosis. She was a true warrior! She fought every day of her decline with dignity and true stubbornness to survive, but after just over 3 years, MND won and our family suffered a second devastating loss to MND.

Following my aunt’s diagnosis, I started to silently ask the question, is this a horrendous coincidence or is there a chance that this could be familial?

The “threat” of MND seemed to constantly linger in the back of my mind for the next few years. Mum and I would have the odd discussion about it after a couple of gins, but it wasn't until I noticed the weakness start in mum’s right hand that my worst fears we coming true. We continued with our heads in the sand, both knowing what was happening, both silently knowing the other knew what was happening but neither of us wanting to actually talk about it as this would make it real. This was the January of 2018. As the year progressed, so did the MND worsening daily, taking my strong, independent matriarchal mum. Weakening her more and more every day. We got the official diagnosis on the 8th of August and we buried mum on the 8th of October of the same year. She died 1 week after her 64th birthday. Although I knew what was coming I was nowhere near prepared to face the utter devastation of losing mum. When mum received her diagnosis, they took blood to try and identify the faulty gene, but the results were not confirmed until after mum had passed.

I was at work when I received the call from the consultant telling us the results were in and our faulty gene is named SOD-1 and confirming what we already knew that this is familial and there is a 50% chance my brother and I have inherited it. I then had the task of breaking this news to my family. Not only my brother, but also my aunts, uncles and cousins, as the diagnosis also effects all of them too.

I have chosen not to find out if I have the faulty gene right now and to instead try to turn the negative into a positive by shouting about my story and raising awareness and funds to help the fight against MND. There is the constant haunting every time I slur a word or stumble on a stone or can't open a jar of jam…. is this the start of my MND battle?

There is no cure for MND and may not be in my lifetime but while I am fit and able I am doing what I can to raise awareness and funds to support and find a cure for the future generations of my family.