‘We have high ambitions, but they need to be high to be a fitting legacy to Nick’

By Rachel Smith
Nick’s Wife & Charity Patron

On Friday, we formally launched our charity in Nick’s memory during a particularly poignant week for me.

21 years ago last week, Nick and I met. And life changed forever. Even now when I think of that night I get butterflies.

But then, six months ago, life once again changed forever – but in a very different way, and it was a forever that I never wanted to face. Nick died, aged just 38, in December last year just 101 days after being diagnosed with Motor Neurone Disease.

The future Nick and I envisaged for us, dreamed about for our children Hadyn and Georgia, was shattered by those three little letters – MND.

This time last year, we didn’t know anything about MND, let alone think it would ever impact our family. But it has, and the impact has been devastating.

I have lost my best friend, my soulmate. Hadyn and Georgia have lost their amazing daddy.

Nick was extraordinary, he was a leader, a captain, a gentle man on and off the rugby pitch.

That is why I am proud to be launching his charity, in his name – The Nick Smith Foundation. A way of Nick still being a leader, still being extraordinary and still helping others out.

Through the charity we want to remember Nick’s life and keep his spirit alive.

We want to do more to raise awareness of this cruel disease, to support more research into finding a cure and to support other families who have been given an MND diagnosis.

We want there to be support for families who have to deal with MND in their lives.

We want to support young children on their path into rugby league so they join the rugby league family.

And, we want to support children who have been bereaved at a young age.

I look at Hadyn and Georgia and I long so much to be able to turn back the clock, to have one more day with Nick, to capture in his words, his life story, his hopes and dreams for our babies’ futures. From the day Nick got his diagnosis, time for us moved far too quickly and now coping afterwards and supporting our children is my focus.

As I’ve tried to navigate the system of child mental health, bereavement support through play therapy, art therapy, support for parents, I’ve found very little to access.

Through the charity we’d like to look at what support there is for MND families who have young children. We need to look at pre-bereavement – what could be done together with families to capture memories and create memories with those who receive a terminal diagnosis that can then be accessible to support children in their grief.

We have high ambitions, but they need to be high to be a fitting legacy to Nick. I will love him forever, I will miss him forever, I will work to help change lives forever in Nick’s memory and in Nick’s name.

Please support us if you can.

Charity pledges to raise £50,000 for research into Motor Neurone Disease

We can announce that The Nick Smith Foundation is pledging to raise £50,000 in its first year for research into the condition.

Raising awareness of MND and improving the support available for those diagnosed and their families are two of the aims of our charity, which was formally launched at Shibden Park on Friday (29 June).

The launch event, attended by Nick’s wife Rachel – who is a Patron of the charity – and the Deputy Mayor and Mayoress of Calderdale, saw the charity’s Trustees outline more about their aims and ambitions and how they were going to achieve them.

Speaking at the launch – for the first time publicly since Nick died – Rachel said:

“I want to take this opportunity to send a very heartfelt thank you to all family, friends and others who have reached out to me and offered their support, words of comfort and love other the past six months, it has meant an awful lot to me, knowing you’re all there.

“I’m proud of this charity and proud it will have a lasting legacy for Nick. It’s a way of him still being a leader, still being extraordinary and still helping others out. Through the charity we want to remember Nick’s life and keep his spirit alive.”

Among the pledges was to raise £50,000 for the Sheffield Institute for Translational Neuroscience who are conducting pioneering work to find out more about MND and how to support those who are diagnosed. Two of the Institution’s researchers spoke at the launch.

The Institute’s founder is Professor Dame Pamela Shaw, who Nick saw shortly before his death:

“What happened to Nick illustrates why our work is so important and why the research teams in SITraN at the University of Sheffield are so determined to ensure that we do all we can to ensure that one day in the near future there is an effective treatment for MND and eventually, a cure.

“A heartfelt thank you to The Nick Smith Foundation for choosing to support SITraN and I can assure everyone who makes a donation to the Foundation that it will be used to make a real difference in the future to people and families faced with MND.”

Stephen Naylor, the charity’s Chair of Trustees, added:

“We need to know more and do more about Motor Neurone Disease – the cruellest of diseases which we still do not know enough about. The team in Sheffield are doing amazing work to change that and we are setting ourselves an ambitious target to support them in their work.

“We will need everyone’s help to raise the money but we know we can do it and we know how much difference it will make to helping smash the disease that took Nick from us.”

The charity’s other aims are to improve support on offer for children who suffer the death of a parent at a young age and encourage more young people to take up rugby league, a sport which Nick was passionate about having played and captained Siddal.

Nick had previously played for the Leeds Rhinos Academy alongside England and Great Britain international Kevin Sinfield who sent a video message for the launch. He said:

“I think it’s a fabulous charity and I support its aims. The passion of both Nick and myself for rugby has always been clear and to put something back into the sport will be an amazing legacy.”

Two rugby league ambassadors for the charity were also announced at the launch – Huddersfield Giants coach Chris Thorman and Giants Academy coach, and fellow Siddal legend, Luke Robinson. Luke said:

“Nick epitomised not only being a true gentleman but an exceptional captain and rugby player. I cannot think of a better way to honour his life and commitment to our club than a Foundation in his name.”

Doddie Weir, the Scottish rugby union legend who is living with MND after being diagnosed 18 months ago at the age of 46, also sent a message of support for the charity:

“When I first heard from Nick’s family, it really stopped me in my tracks. This devastating disease is indiscriminate and has such a terrible impact on the whole family – and Nick and Rachel’s story brought home to me just how important it is for us all to do what we can to help find a cure for MND.”

“I wish you all the very best with the Nick Smith Foundation – we are all working towards the same goals and with the combined energies of our supporters, we will continue to strive to make a difference.”

“Sport played a big part in Nick’s life and I have found the sporting community has come together in an amazing way to show its support for what we are trying to do. I have no doubt that the Nick Smith Foundation will make an important contribution to those affected by MND.”

Welcome to The Nick Smith Foundation

 

It was not long after Nick’s death that Rachel and I first discussed how we could remember the amazing man who was her husband and my wife’s brother. Nothing can take away the pain of losing him. Nothing can ever replace him. But we want to make a difference – in his memory, in his name.

How to achieve that was hard, knowing what to support was difficult. Nick was a man who meant so much to so many. He was an amazing father to two young children, a work colleague who could be depended upon day-in, day-out and a team mate who was every much a leader and warrior on the rugby field as he was a gentleman off it.

In deciding our objectives, we looked at the areas that influenced his life. Rugby league was a constant feature from a young age – at community level, at amateur level and at professional level. It seemed only fitting that one of our aims should revolve around that and encourage other young people who want to take it up and support the clubs who can deliver that.

Then there is the disease that took Nick from us – Motor Neurone Disease. The cruellest disease imaginable. It took just 101 days from Nick being diagnosed to him dying in hospital. A shockingly short amount of time, but enough time for us to understand there simply isn’t the research into MND to properly understand it – let alone treat it – nor the support available for those diagnosed, and their families, in the timeframe needed for what can be such a horrific, life-shortening condition.

Finally, there’s Nick’s lasting legacy. His children – Hadyn, who is five, and Georgia, who is now three. Nick’s death is incomprehensible to those of us who are adults, so how on earth are they meant to understand. They can’t, they shouldn’t have to. While we have been supporting them as much as we can, and I am personally so proud of them for how they are coping, it is important there is other support on offer for those children who lose a parent at a young age. It is one of the cruel coincidences – and there are so many cruelties in what has happened – that Nick and my wife Helen lost their own father when they were very young. He too was 38.

So, those are our three aims as a Charity:

  • We want there to be a better understanding of and support for those diagnosed with Motor Neurone Disease, and their families
  • We want there to be more support available for children who have to face the death of a parent at an early age – both for the children themselves and the surviving parent.
  • And, we want there always to be support and opportunities for people, especially young people, to get involved with community and amateur rugby league, in the same way that Nick did at the age of eight.

You can find more information about our aims and how we hope to achieve them through this website and we hope you will join us in supporting our activities.

Nick was much loved. He is much missed. He will be remembered, always.

Stephen Naylor
Chair of Trustees, The Nick Smith Foundation