Neuroblastoma is a cancer where tumors occur in the sympathetic nervous system and most often present in the abdomen. Neuroblastoma is also a cancer with one of the lowest known survival rates, only 67% of children diagnosed surviving.
Neuroblastoma might just be a word to you; but to Chris, Sam, and Niamh – it’s a word that changed their lives forever.
In December of 2010 a sweet girl named Niamh was diagnosed with Neuroblastoma after a scan due to a urine infection she presented with – it was found entirely by accident.
Neuroblastoma is one of the most underfunded types of cancer in the UK and the family immediately knew they had to do everything they could to help save the life of their daughter. Niamh fought with strength and bravery for 18 months but the cancer ultimately overwhelmed her body – she earned her angel wings on Sunday, May 20th of 2012.
Niamh’s family organized a charity drive – Niamh’s Next Step to raise money to get her to the United States to try to have access for lifesaving treatment. After her death the drive turned into an organization that now tries to raise awareness about Neuroblastoma and to help other families experiencing the same thing that they went through.
This is where Johannah Deakin and Louis Tomlinson come in, and where fans of One Direction can also make a difference. If you know anything about Johannah and Louis, you know the best thing about them both lies in the size of their extremely kind and charitable hearts, but more than that, in how selfless they are in enhancing the lives of any person that they can.
In early 2016 it was announced publicly that Johannah would be a Patron for Niamh’s Next Step and that inspired us to get involved and spread the message of help and hope. We spoke with Chris, Niamh’s father and chairman of Niamh’s next step and found out more about their story, how Johannah Deakin and Louis Tomlinson are involved, and how we can all help change the lives of those affected by Neuroblastoma.
When did Niamh begin to fall ill? – Niamh was diagnosed with Neuroblastoma in December of 2010 by a scan after a urine infection.
Research into Neuroblastoma isn’t funded by the UK Government or NHS – when did you decide to create this charity? – Niamh’s Next Step was first created to try to raise £450’000 to get her to the US for lifesaving treatment after we were told in Nov 2011 that she had relapsed and there was no more treatment available in the UK. In the US there are many more options to fight neuroblastoma but it’s very expensive. From November 2011 to May 2012 when we sadly lost her we had raised an amazing £375’000 but the cancer was so aggressive and she couldn’t fight it anymore. Treatment for Neuroblastoma in the UK by the NHS is second to none and because treatment is so expensive there is no money left to fund research by the NHS. The UK government does not fund any research into neuroblastoma directly as far as I know.
You’ve just announced your work with Johannah and Louis’ involvement too – what do you hope to have accomplished at the end of 2016? – We are so pleased to have Johannah come on board as a patron of Niamh’s Next Step. Johannah is a very caring lady with an amazing family who follow in her footsteps. Our main achievements in 2016 with Johannah and Louis are to raise as much awareness of Niamh’s Next Step and neuroblastoma. With the awareness raised we hope to continue to move forward as a charity and fund more vital research projects.
Why was Johanna important to have for this charity, and did you know her before you asked her to become a patron for your cause, and for Louis’ help too? – My wife Sam had been in contact with Johannah for some time. She contacted Sam one Saturday morning and invited me, Sam and our daughter Hannah up to Birmingham to a One Direction show. We meet Johannah, Louis, Lottie, and Felicity and they looked after us so well. Louis arranged for a couple of incredible goody bags full of One Direction stuff for Hannah and her best friend Bronte and we watched the concert which was incredible.
When we got home Louis had tweeted us a lovely message…
We spoke to Johannah a week or so later and asked if she would like to become a patron. She said she would be honored which was amazing.
Why was it important to keep Niamh’s Next Step going after the loss of your daughter? – After we lost Niamh the response was amazing. We had made a lot of amazing contacts trying to raise the money to get her to the US. It would have been wrong of us to just give up no matter how much we were and still are hurting. Niamh put us in a position where we can actually do something to help other children fighting this vile cancer and we proud to do that in her memory.
If you could tell the world one thing about Niamh, what would it be? – If we could tell the world one thing about Niamh it would be that ‘Niamh’s job in heaven is to paint the rainbows so every time anybody sees one to think of her and say hi.’ She is our inspiration.
It’s safe to say, after finding out more about Niamh, her incredibly strong family, and how they still aim to make a difference in the world of anyone else going through the pain that Niamh went through; there is absolutely no way Johannah and Louis could have come across this family and not been absolutely ecstatic to help them.
Louis, who had a hard 2015 in the media, has continued to show his kind heart – often below the radar, never asking for recognition or thanks for his compassion. He’s helped change the lives of so many people and influence his fans across the world to do the same. It’s clear that he gets his generosity from Johannah who has shown her giving spirit alongside Louis for the last five years. When either one of them come across an individual, or a family that they can help, they do so with no hesitation – no second thought. Many One Direction fans find it inspiring to be a fan of them both.
One Direction fans are not strangers to charity drives, and when One Direction NDA saw Johannah’s involvement with Niamh’s Next Step, they immediately set up a charity drive to celebrate Johannah’s birthday and to raise money and awareness for Niamh’s cause. We talked about this drive here and with Johannah’s birthday approaching in March there is still plenty of time to get involved!
You can also donate at Niamh’s Next Step‘s Just Giving page and leave messages of hope for her family and anyone else struggling with Neuroblastoma. The disease brings a lot of pain but with love, hope, and kindness we can change the way that pain is experienced for the children fighting, their families, and people like Johannah and Louis who donate parts of themselves to make a difference too.
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