Personal Stories
A growing collection of individual neuroblastoma experiences and perspectives as told by the families, friends and carers most closely affected. If you’d like to share your story, please email stories@neuroblastoma.org.uk
Niamh, now 25 years old, was diagnosed with neuroblastoma when she was 15.
In 2020, her cancer returned and she is once more undergoing treatment. She’s currently on a research drug trial but is doing well. This is her story.
Aurora employee, Jody, nominated Neuroblastoma UK to be one of the company’s charity partners for this year, after sadly losing her six-month-old daughter, Ellie, to neuroblastoma in 2011. Jody shares her story here…
When Ari was diagnosed with neuroblastoma at the age of 13, it came as a huge shock. She had never experienced any symptoms. Now, a year on since her diagnosis - and as part of Teenage And Young Adult Cancer Awareness Month - her mum, Mattea, shares her story…
Grace was diagnosed with neuroblastoma two weeks after her 16th birthday in May 2021. Now 18, she has recently finished treatment and is training to be a paediatric nurse. Grace shares her story to mark Teenage And Young Adult Cancer Awareness Month…
Harper was a year old when she was diagnosed with Stage 4 High Risk Neuroblastoma in April 2023. A year on since her diagnosis, her family are hopeful that, with further treatment, Harper will remain healthy and happy. Harper’s mum, Jenny, shares her story here…
On this important day, we would like to share with you a story about a beautiful little boy, Spencer, who sadly passed away in 2007 from neuroblastoma. Spencer’s mum, Amanda, has kindly shared this story to help raise awareness about the drastic need for new, more effective and less punishing treatments for neuroblastoma.
Hayley has kindly shared a heart-warming story about her son, Alex, who was diagnosed with neuroblastoma at the age of two. Alex’s story demonstrates just how important treatments and research can be for the lives of children with neuroblastoma and their families.
After experiencing a lack of appetite, temperatures, lethargy, sickness and numerous trips to the GP, Cara was diagnosed with neuroblastoma.
Despite 19 months of treatment, Cara relapsed three months after completing front-line treatment. She was just three years old when she passed away in February 2020.
Isobel, Cara’s mummy, shares their story to help other parents spot the signs of this cancer earlier.
Zahra was diagnosed with neuroblastoma when she was just two weeks old. Now 21, she recently graduated with a law degree! This Childhood Cancer Awareness Month, Zahra shares her story to help other families currently experiencing neuroblastoma. “If my story can offer solace, inspiration, or guidance to just one person or family, I find immense fulfilment in knowing that my experiences have made a positive impact. “
Reggie was diagnosed with stage three neuroblastoma in November 2020 after he became unwell with a high temperature and constipation. Doctors initially suspected a tummy bug or appendicitis. But a scan revealed a tumour attached to his adrenal gland. Just one month after he rang the end of treatment bell in June 2021, Reggie relapsed. He sadly passed away on 17th July 2021. Reggie’s mum Jo shares their story.
Apollonia (Apple) was diagnosed with stage four, high risk neuroblastoma on 9th August 2021. She has been in remission since November 2022 and is a happy, healthy six year old. “Thanks to the research funded by Neuroblastoma UK, our Apple has a chance now.” Anthea, Apple’s mum, shares their story.
“My son Oscar was diagnosed with intermediate risk L2 neuroblastoma when he was five months old. Oscar needed several rounds of very strong chemo and more surgery to remove most of the tumour. But nothing has ever stopped him and in August we celebrated Oscar’s third birthday. There is hope.”. Joanne, Oscar’s mummy, shares their story.
Chloe was diagnosed with stage 3 neuroblastoma in 2010 when she was fifteen years old.
Six years later she qualified as a children’s nurse, now works on a paediatric ward and has even published a book about her experience! Chloe has shared her amazing story as part of Teenage and Young Adult Cancer Awareness Month.
Ellie was diagnosed with stage 3 neuroblastoma when she was 13 years old, after an unusual lump was found in her abdomen.
Now cancer-free for five years, Ellie is currently completing a Sports Science degree, is a part-time gymnastics coach and has recently become a volunteer at Neuroblastoma UK. Ellie shares her story to inspire other teenagers with cancer.
“Our beautiful daughter Georgia was born in May 2004 - she should be celebrating her 18th birthday this month.
But in October 2016, at the age of 12, our wonderful, happy child passed away after being diagnosed with neuroblastoma. We set up Georgia’s Fund to help fund research into neuroblastoma, and have raised more than £200,000 so far.” Georgia’s dad Richard shares her story.
Lily was diagnosed with stage four, intermediate risk neuroblastoma as a baby.
“Because of her treatment, Lily now has tinnitus and ankle-tightness. She needs to do regular exercises and wear in-soles but she never moans and always gets on with things. Even when she’s in pain, she never complains or gives up. Now at 11 years old, she loves to run, trains every week and wants to be the next Jessica Ennis!” Lily’s mum Angela tells their story.
Five year old Pippa was diagnosed with intermediate risk neuroblastoma in 2018.
In August 2022, her mum Elisse is taking on the Royal Parks Challenge - trekking 45km, through all 10 of London's Royal Parks, in just one day. Elisse shares their story and tells us why they support Neuroblastoma UK.
Sayra recently joined Neuroblastoma UK as one of our first Volunteer Charity Ambassadors.
She had stage 4s neuroblastoma as a baby and in February 2022, celebrated qualifying as a solicitor. Now 26, Sayra shares her story.
Becky was diagnosed with neuroblastoma 50 years ago in 1972. She was 18 months old and was given a one per cent chance of survival.
Thanks to a clinical trial, she is able to share her story today and give families hope for the future.
Charlotte was diagnosed with stage 4 neuroblastoma when she was just 12 weeks old. The tumour was wrapped around her spine, crushing the nerves and causing permanent paralysis below the waist. But Charlotte’s determination to succeed has seen her go on to achieve incredible things.
Today, Charlie represents Team GB in basketball and has won medals in the 2018 World Championships and several European Championships and has a degree in Human Biology. This is her inspiring story.
Lauren was diagnosed with stage four neuroblastoma in 1983, when she was 16 months old. She was given a 10% chance of survival.
Today she says, ‘It is a privilege to share my story. Like Neuroblastoma UK, I also turn 40 this year and I've reached this milestone thanks to the amazing doctors and science that saved me! I’ve been given the gift of being here - now, as a parent myself, I want to give something back to help others.” Lauren tells her own story.
Just weeks before her 2nd birthday, Beth was diagnosed with stage four high risk neuroblastoma.
But two years after her initial diagnosis and being clear of her cancer for six months, Beth relapsed twice. On Christmas Eve 2019, Beth quietly passed away. She was five years old.
Jill, Beth’s mummy shares their story.
Evie was diagnosed with stage L2, intermediate risk neuroblastoma in September 2020, when she was 21 months old.
“Evie has been so resilient, happy and amazing throughout her treatment. But we know things could be so different if we hadn’t taken her to the doctors when we did. One year later, she’s doing really well and is a feisty, energetic 2.5 year old.” Evie’s mum Kelly shares their story.
George, aged three, was diagnosed with stage four neuroblastoma in April 2020.
“When George was diagnosed, it really helped to read positive stories so I hope our story helps other families like ours to see it’s not all doom and gloom.” His mum Roxanne shares their story.
Lily was diagnosed with low-risk neuroblastoma when she was just over one year old.
“By December 2019, Lily was thankfully in remission. We were lucky that she was at an age where she didn’t really know what was going on. We can start to hope for the future and put it all behind us.” Lily’s mum Alex shares their story.
Teddy was diagnosed with stage 4 high-risk neuroblastoma in April 2018 when he was 16 months old.
“We didn’t think he’d make it to his second birthday but Teddy turns 4 just before Christmas and is healthy, happy and raring to explore our new home.” Emma, Teddy’s mum shares their story.
After losing his appetite and doctors initially thinking he had appendicitis, three year old Rupert was diagnosed with stage 4 high-risk neuroblastoma in November 2019. His mum Alice shares their story.
Evan was diagnosed with neuroblastoma when he was 16 months old and the tumour was the size of half a football. Evan is now three and half and finished his treatment in November 2019.
“He’s such a happy boy today and you wouldn’t know anything was wrong. He started pre-school in September, loves vehicles and is so easy-going. We know many families who have lost a child to cancer that we feel so lucky to have Evan. He’s been incredible.” Evan’s mum Sarah shares their story.
Two year old Elara spent Christmas 2019 in hospital, after being diagnosed with neuroblastoma on 13 December 2019. She had an 11cm mass in her tummy and needed treatment straight away.
“It will be a huge celebration to have Elara at home this Christmas and I am so grateful she’s responding well to treatment. This is our story.”
Carolyn is supporting Neuroblastoma UK by taking on the Glasgow Kiltwalk 2024 in memory of her son, Matthew, who sadly passed away in November 2022 at the age of two and a half. She shares Matthew’s story here…