Benny's campaign

Four-year-old Benny is a happy, kind and caring little boy who loves to play and laugh. He adores football and wants to play for his favourite team, Newcastle United, when he grows up.  

In February 2023, just after his second birthday and three weeks before his sister Zara was born, Benny was diagnosed with high-risk neuroblastoma – a rare and aggressive childhood cancer with only a 40-50% chance of long-term survival at diagnosis.

Benny completed frontline treatment in March 2025 and started DMFO, a drug that aims to prevent relapse. His family had started to enjoy life without the restrictions that treatment imposes when, in September, a routine scan showed an irregularity in his lung. Surgery later confirmed his parents’ worst fears: Benny’s neuroblastoma had returned.  

His parents, Nicola and Daniel, have decided to fundraise so that Benny can access potentially life-saving treatment to get back into remission. Because he has relapsed, his treatment options are more limited. Treatments not available through the NHS can cost hundreds of thousands of pounds. Following promising results from a CAR T-cell trial in Rome, they are fundraising in the hope that he will be able to travel there to access this therapy. 

Benny’s story  

Slowly, over a period of a few months, Benny lost his appetite, refused to eat, and began losing a significant amount of weight. He also became very unsettled at night and caught numerous viral illnesses. Benny stopped being his usual happy, boisterous self and became withdrawn.  

After multiple trips to the GP, Benny developed a limp and was unable to walk, so his parents took him to A&E. It was then, shortly after his second birthday, that they received the devastating news: Benny had high-risk neuroblastoma. Doctors discovered an extremely large mass in his abdomen, and the disease had spread to his bone marrow, lymph nodes, and several other sites in his body. 

Treatment  

Benny immediately began what would become two years of intensive treatment. He endured 12 rounds of chemotherapy, high-dose chemotherapy, stem cell harvesting, 20 sessions of radiotherapy, immunotherapy, and six months of Lorlatinib. 

In addition to this gruelling treatment, Benny faced the trauma of having nasal feeding tubes inserted, regular GCSF injections, cannulas, and the restrictions of life with a Hickman line. Regular bone marrow aspirations have also left Benny with lots of scars around his hips. 

During treatment, Benny developed frequent fevers and additional illnesses, which meant he spent a lot of unplanned time in hospital. Instead of being able to play like a typical toddler, he spent much of his time within the hospital walls, often in isolation. The treatment left him so exhausted that he was often unable to walk and had to be carried or placed in a pushchair. 

Life after treatment  

After two years, Benny finally finished his frontline treatment in March 2025 and began taking DFMO, which his parents hoped would stop the cancer from returning.  

Benny’s parents spoke about life after his treatment finished: 

“In our eyes he was thriving. His strength had been improving; he’s been putting on weight and enjoying spending time with friends. He started school in September and loves it – especially on Wednesdays when they do PE. We’ve loved living life as a family without the restrictions that treatment imposes.” 

However, life after treatment also came with complications. Benny now wears hearing aids due to high frequency hearing loss caused by the chemotherapy drugs used, and DFMO has also added to his hearing loss. He has poor kidney function due to the impact of the main tumour and the treatment, and he also experiences nerve pain.  

Despite everything he’s been through and the lasting effects of his treatment, Benny is still such a happy, kind and caring little boy who loves to play and laugh. 

Relapse  

In September 2025, shortly after Benny had started school, a routine MIBG scan revealed an irregularity in his lung. His family and doctors hoped it was simply due to inflammation or an infection. However, when Benny underwent keyhole surgery to remove the lump in his lung, a biopsy confirmed their worst fears: his neuroblastoma had sadly returned. 

Relapsed neuroblastoma is particularly difficult to treat, and the chance of survival is only around one in ten. Unfortunately, there is also no straightforward path for treating relapsed neuroblastoma, and Benny is currently ineligible for clinical trials here in the UK. Following promising results from a CAR-T cell trial in Rome, his family is fundraising to do everything possible to get him there and give Benny the best chance of beating this again.  

_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Benny and his family. If Benny no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with relapsed high-risk neuroblastoma, like Benny, the survival rate is much lower than other childhood cancers.}