Five years ago this week, this little girl passed away peacefully in the arms of her mum and dad.
Niamh Curry of Wellingborough was just five when she lost her 18-month battle with neuroblastoma.
Her fight against the childhood cancer touched the hearts of many people and while May 20, 2012, changed the lives of her parents Sam and Chris and sister Hannah forever, it was also the start of a lasting legacy to Niamh.
Support flooded in after Sam and Chris launched an appeal to raise £450,000 to get her to America for specialist neuroblastoma treatment, but sadly it was too late for Niamh.
However, her parents were determined to keep her memory alive by trying to help other children like her.
Dad Chris said they had so much support and made so many contacts that he was adamant they would put these to good use.
He said: “People took us to their hearts, they took Niamh to their hearts, and we just carried on.
“We had no idea how things would go.”
Neuroblastoma is an aggresive cancer which mainly affects children.
About 100 children are diagnosed with it each year in the UK, of which only about 30 per cent will survive.
Research into the disease is not currently funded by the NHS or the UK Government so research is where Chris and Sam wanted the money raised by Niamh’s Next Step to go.
In the past five years, the charity has put £300,000 into research projects.
They work with numerous charities, including Sparks, Great Ormond Street Hospital, Neuroblastoma UK and SIOPEN (International Society of Paediatric Oncology Europe Neuroblastoma Group).
Niamh’s Next Step has been joint funding the UK’s annual levy to the European research network that carries out research into neuroblastoma since 2014.
This funding means UK children will continue to have access to clinical neuroblastoma trials.
It also ensures there is continued maintenance and development of the SIOPEN database, where data on trials from European countries involved in the high risk neuroblastoma study is collated, analysed and used for the benefit of UK children with neuroblastoma.
Chris said research is their priority with the ultimate aim of finding a cure.
He said: “Neuroblastoma is horrible, the treatment these little girls and boys have to go through is just horrible.
“The ultimate goal is a cure, but if we can make life a bit easier for these children and help them have longer lives, that would be great.”
The charity has also helped families affected by neuroblastoma, including buying wheelchairs for youngsters undergoing treatment.
And in the last few months, Sam and Chris have been supporting Floyd and Danielle, who live just a stone’s throw away from them in Wellingborough with their 10-month-old son Gerry who was diagnosed with neuroblastoma last year.
This is one of the reasons they set up the charity, to help other children fighting neuroblastoma and their families until a cure can be found.
And they have no plans to stop any time soon.
Chris said: “We need to keep growing and evolving.
“As long as we continue to raise money and awareness the right way, we are always going to keep going.
“We have built some amazing relationships over the years with businesses and people, and we will keep doing what we are doing and putting the money into research.
“It’s quite surreal what we have done, I would never have thought it would be like this.
“When we lost Niamh, we could have just walked away and tried to start again, but because of the support we had from everyone, everything carried on and grew.”
He said it has been a steep learning curve and admitted running a charity isn’t easy.
But the support from people in Wellingborough, across the county and much further afield has helped them get to where they are today.
Chris said: “The charity has grown over five years, it’s phenomenal.
“The support we have had from people has helped us massively.
“We will never forget Niamh, she is always in our thoughts.
“But these events are making a massive difference.”
The charity’s patrons play an important role, with patrons including Saints stars Ben Foden, Lee Dickson and Alex Waller, former cricketer Darren Gough and Soccer AM star Tubes.
Chris also has praise for the team who organise fundraisers such as the gala ball and golf days.
He said: “We have got an amazing group of trustees, no-one gets paid, we have very little overheads and every penny is going into research.”
While nothing will bring Niamh back, Chris is proud of what they have achieved as a lasting legacy to their little girl, who ‘always had a smile on her face.’
And he added: “A genuine thank you to everyone that’s supported us.
“We have come a long way in five years, but there’s still so much to do.
“Thank you to everyone for their continued support and please keep checking the website for our events.”
For more information about the charity, click here