Parent Involvement Forum 

Naomi Bentham

Naomi first became involved with the charity in 2012 when her daughter Anya was diagnosed with stage 4 high-risk neuroblastoma. After Anya needed second line chemotherapy to clear the disease from her body prior to stem cell transplant, it became clear that they may need to access treatment outside the NHS and the UK in the hope of giving Anya the best chance of survival. Along with an incredible core team of fundraisers, Naomi and her family raised over £250,000. Without support from Solving Kids’ Cancer UK, this would not have been possible. After successfully completing frontline treatment, they enrolled Anya into the DFMO trial in Michigan in 2014 with the aim of helping to prevent relapse. Anya was the first child from the UK to enter and complete this trial. Naomi has continued to raise awareness of the work that Solving Kids' Cancer does through television and press interviews, social media, and word of mouth. Naomi has a background in Marketing and Communications and currently manages small businesses social media accounts through her role as a virtual personal assistant. Her life is devoted to having adventures with her husband Graeme, the incredible Anya, their youngest, Noah, and their two dogs, Jack and Louis.

Carrie Wright

Carrie first became involved with Solving Kids' Cancer UK when her daughter Lucy, then aged eight, was diagnosed with stage 4 high-risk neuroblastoma. After completing the first stage of frontline treatment at Royal Manchester Children's Hospital, Lucy was identified as a refractory patient and as a result, took part in the MiNivAn clinical trial which was part-funded by Solving Kids’ Cancer UK. As the family live in the North of England, Solving Kids' Cancer UK reached out to support the family with their regular travel commitments to Southampton during 2019. After almost three years of treatment, Lucy was declared No Evidence of Disease in April 2021. Throughout Lucy's treatment, the family fundraised independently to raise essential funds to get Lucy to North Carolina to take part in the DFMO trial. Sadly, in October 2022 the family were told that Lucy had relapsed and treatment commenced back in the UK starting with chemotherapy. Lucy is currently receiving treatment in Leeds on a trial using naxitimab. Carrie gave up her career as a HR Consultant when Lucy was diagnosed and devotes her time to Lucy, now age 13, Lucy's younger brother Sam, six and husband Richard. "I'm so proud to be involved with Solving Kids’ Cancer UK. We've had invaluable support during our journey. It's vital that the amazing work continues and that families like ours continue to be supported through what will most likely be the biggest challenge of their lives".

Garrett Fitzgerald

Garrett’s involvement with Solving Kids’ Cancer UK began in 2018 after his youngest daughter Lauren was diagnosed with high-risk neuroblastoma in July 2018. After successful NHS frontline treatment finished in September 2019, Lauren completed the bivalent vaccine clinical trial at Memorial Sloan Kettering Cancer Center in New York in October 2020. Garrett is the Director of Freshways and lives in Northern Ireland with his wife Mary Clare and their four children.

Naomi Shefford-Thomas

Naomi's youngest daughter Phoebe was diagnosed with neuroblastoma aged nine months and spent almost four years undergoing treatment, which she completed in 2019. The family were supported through much of that time by Solving Kids' Cancer UK, which included help in knowing where to find accurate and up-to-date information. With the support of Solving Kids' Cancer UK, the family were then able to make informed decisions with regards to Phoebe’s treatment pathway. Naomi lives in Leicestershire with her husband Russell and two daughters, Amelie and Phoebe. "I feel honoured to be part of the Parent Involvement Forum and look forward to being able to contribute to the important work of Solving Kids' Cancer UK".

Mark Bell

Mark first became involved with Solving Kids' Cancer in 2017 when his son Luke was diagnosed with stage 4 High Risk Neuroblastoma. After completing front line treatment, Luke relapsed & although treatment options were very limited, he was accepted on a new trial, MiNivAn, which was funded by SKC. Luke was the first child to enter the trial, even appearing on Channel 4 News as part of its launch. 

Sadly, Luke didn't complete the trial. He died in December 2018 after his cancer returned quite aggressively. The impact of what happened led to the creation of Team Luke Foundation by Mark & his family. 

Mark works as a Senior Compliance Officer in the Home Office. He's also a very keen rugby player. As well as playing for a Darlington Rugby Club, he often puts his rugby boots on for Wooden Spoon, the children's charity of rugby.  

Mark is both honoured & proud to be involved in SKC's Parent Involvement Forum and is looking forward to making a positive contribution to SKC's hugely important work in supporting families through the most challenging of times. 

Mandy Berriman

Mandy's youngest son Peter was diagnosed with Intermediate Risk Neuroblastoma in 2019, aged 8. Treatment at the Royal Manchester Children's Hospital was straightforward and successful though the tumour caused a spinal cord injury resulting in paraplegia.  

Her involvement with Solving Kids' Cancer UK started in 2020 when Peter relapsed with High-Risk Neuroblastoma. Treatment was not so straightforward and SKC were incredibly helpful in providing information about treatment trials and future options which helped the family to make informed decisions about Peter's treatment pathway. 

Peter finished treatment in July 2021 with stable disease and no further treatment options available in the UK. With support from SKC, Mandy, family and friends raised £150,000 so that Peter could access an expanded access DFMO trial in Charlotte, North Carolina. He began DFMO in January 2022 and in July 2023 a PET scan showed that the stable disease was no longer active. Peter finished DFMO in January 2024 and is currently NEAD.  

Mandy lives in North Derbyshire with her husband, Martin, and two sons, Sam and Peter. She works part-time as a Primary School music teacher. “It is a privilege to be involved in the Parent Involvement Forum. We have received incredible support from SKC over the years and it is important to me to be able to give something back to ensure that SKC continues to be a place of support for future families.” 

Catherine Morais

Hi, my name is Cat and I’m mum to 2 beautiful twin girls, Ivy & Willow. Willow was diagnosed with low risk neuroblastoma the day before her first birthday in March 2022. Sadly after 8 months off initial treatment Willow relapsed and then underwent intermediate risk protocol which consisted of surgery, chemotherapy, proton beam radiotherapy and consolidation therapy. She finished active treatment in March 2024 and is now having regular scans to monitor her. Willow also sustained a spinal cord injury from her initial tumour so we are undergoing physical therapy for that, and she is making amazing progress.  

Sam Anstey

Sam’s journey with Solving Kids’ Cancer UK began when his daughter Aria was diagnosed with high-risk neuroblastoma at the beginning of 2023. Due to Aria's age at diagnosis and a severe needle phobia, the treatment journey was uniquely challenging, requiring specialised support and understanding. Solving Kids' Cancer UK provided invaluable guidance as the family sought second opinions, which offered significantly different treatment options to those available in the UK. This support empowered Sam and his family to make informed decisions that they felt were in Aria’s best interests. Sam is grateful for the crucial role Solving Kids’ Cancer UK played in their journey and is committed to contributing to the community through the Parent Involvement Forum. 

Claire Bailey

Claire’s daughter Poppy was diagnosed with stage 4 high-risk Neuroblastoma at four years old. She treatment began in July 2020 at Addenbrookes hospital in Cambridge. After a few months of chemotherapy, Poppy became referred to as a refractory patient and was enrolled on the MiNivAn clinical trial, partly funded by Solving Kids’ Cancer UK. This was when Claire was first introduced to the charity, and they helped her family navigate the next steps of Poppy’s treatment. 

With such a positive response to the MiNivAn trial, Poppy was then able to return to Addenbrookes for surgery to remove her primary tumour in her chest. She underwent high-dose chemotherapy with stem-cell rescue at GOSH, before returning to Addenbrookes for radiotherapy and immunotherapy. She was declared NEAD in October 2022 and is currently a happy and active nine year old, enjoying climbing, drama and cub scouts.  

Claire lives at her home near Bedfordshire with husband Ross, and children Poppy and Oscar. Claire has recently returned to work part-time as a support worker for adults with learning disabilities. “Solving Kids Cancer UK have supported us enormously throughout Poppy’s journey, and I feel honoured to now become part of the Parent Involvement Forum. It is vital that the charity’s fantastic work continues, to support other families like ours and to help fund important research”.  

Debbie O'Kelly

"We first got involved with SKC during the first quarter of 2022, after my daughter Dulcie was diagnosed with stage 4 high risk neuroblastoma. Our entire world fell apart, and we now found ourselves navigating through so much, both emotionally and physically. We had so many medical terms being thrown at us, it was like we were toddlers learning to walk again, learning to say new words and having to try and relay this to a 5-year-old little girl in a way that she would understand.

“Enter Solving Kids Cancer, Vicky and Donna were like a breath of fresh air, helping me to understand what was being said to me, advising me to stay away from google (we are all guilty of it) but also encouraging me to also do my own research by asking the doctors and nurses questions (also which were the right questions to ask).

“Dulcie is 3 years into her journey but it's a journey we are hopefully coming to the end of. Thanks to SKC we were able to access two different UK trials. The first one Dulcie was the first child in the UK to be eligible for, it was a rough ride but one we endured and helped us get that little bit closer to ringing that bell. The second one was the MiNivAN trial which saw us yet again travelling far from home, but SKC was there every step of the way, holding our hands and answering our questions & concerns. We couldn't have done this journey without them.

“Now that Dulcie is coming to end of her journey, I would like to pay it forward and help other families with their journeys and, if possible, make it an easier one.

“I am proud to be part of the SKC team.”