It may be four months since little Niamh Curry died of an aggressive childhood cancer, but her impact on the world lives on.
Sitting in a dining room at their Wellingborough home, close to a wall filled with pictures of Niamh’s pretty, smiling face, her parents Sam and Chris Curry explain to me how they are planning to let their daughter’s memory endure, even after her death.
Chris said: “We have now decided to set up Niamh’s Next Step as a charity in its own right. All the Facebook and Twitter followers we have and people who have supported us want to keep Niamh’s memory alive. It is a way to make sure that no-one forgets her. We know how things could have been different in our course of treatment in the 18 months and afterwards and we can hopefully learn from that and be a help to others.”
It was 2010 when Niamh was diagnosed with neuroblastoma and from that point normal life as the Curry family knew it was thrown into agonising disarray.
Days and nights were spent at hospital as Niamh underwent extensive therapy but, when the youngster’s cancer returned, the family came to the realisation there were no treatment options left in the UK.
So they began their epic battle to raise £450,000 in an appeal known as Niamh’s Next Step to enable Niamh to travel to America for the Anti GD2 drug she needed.
The family raised a staggering £360,000 but in May this year five-year-old Niamh tragically contracted pneumonia and lost her fight for life.
All the money raised went to the Neuroblastoma Alliance (which funds treatment and research) and now the Curry family are starting again to raise money for the Niamh’s Next Step appeal as a new charity, with the fresh target of £5,000, to enable registration to take place.
Chris said: “There are people who know us and trust us, they know we raised a lot of money and this is an opportunity to do something in Niamh’s memory. We have to carry on the work, there is still so much awareness to raise.”
Neuroblastoma is a childhood cancer which accounts for about 15 per cent of deaths through cancer in children. Each year in the UK, about 100 new cases of neuroblastoma are diagnosed and the long term survival rate for high risk neuroblastoma patients is less than 40 per cent.
The Curry family, which also includes Niamh’s sister Hannah, want to not only continue to raise awareness of neuroblastoma but to start raising funds to directly support affected families.
For example, most parents will find they cannot work while they are caring for their ill children, and can suffer financial strain.
One important aspect of care which Chris and Sam believe is lacking is counselling support. Currently on a six-month waiting list for bereavement counselling, the Curry family believe counselling should be available from the point when a child is diagnosed.
With so much support in place from the public and celebrities such as Tess Daly, Westlife and, most recently, boxing legend Sugar Ray Leonard, Niamh’s Next Step already has more high-profile support than many small charities could dream of.
After meeting Chris recently, Leonard tweeted: “I totally support Niamh’s Next Step and dad I didn’t meet your angel but love her anyway.”
Work is already in place organising some of the fundraising events which will support Niamh’s Next Step. One being organised for April next year is known as the Five Mile Smile and will involve participants taking on a five mile walk, cycle or run.
Chris said: “People have just carried on with their support and it went from raising money for Niamh to helping others.
“We are so grateful to the Northants businesses and schools for all their fundraising and we hope they will continue to support Niamh’s Next Step.”
Sam said: “They don’t want to forget her. Every time people see a rainbow they put it on Facebook [Niamh was a Rainbow in the Girl Guides], they want to keep her memory going. It is other people who have kept us wanting to do this.”
Sam said: “We both say, if we feel down we will look at a picture of Niamh smiling.
“All those people on Facebook and Twitter are friends, they remember her.”
Chris said: “She passed away on a Sunday night and every Sunday we know people light their candles and if they see a rainbow they will tell us. There are people as far as Canada who will tell us they are thinking of Niamh.”
For information log on to www.niamhsnextstep.com.