Leonardo is a four-year-old from London who loves superheroes and motorcycles. In May 2022, Leonardo was diagnosed with high-risk neuroblastoma and sadly towards the end of frontline treatment scans showed new areas of disease.
Leonardo loves Ninjago Lego, skiing and his baby sister Arianna. When he is not in hospital, he likes nothing more than spending time with her.
In May 2022, Leonardo was diagnosed with high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
His family are urgently fundraising for potentially lifesaving treatment that is currently not available through the NHS that they hope will get him back into remission. As Leonardo has relapsed neuroblastoma, his treatment options on the NHS have become more limited. Treatment could cost hundreds of thousands of pounds.
At three and a half years old, Leonardo started complaining about tummy ache, lost his appetite and was tired and lethargic. These symptoms lingered for weeks and only seemed to worsen. After many inconclusive trips to the GP and paediatricians, an ultrasound revealed a large mass in his abdomen.
In May 2022, Leonardo was diagnosed with high-risk neuroblastoma, a rare and aggressive childhood cancer. He started treatment straight away at Great Ormond Street Hospital in London.
Since his diagnosis, Leonardo has completed 14 months of gruelling treatment which has included chemotherapy, high-dose chemotherapy, and surgery to remove the primary tumour (for which the family had to travel to France as the tumour was deemed inoperable by surgeons in the UK), five cycles of immunotherapy and 12 days of radiotherapy.
He has experienced several treatment-related complications including requiring a second surgery to fix a small bowel obstruction following surgery to remove this tumour, veno-occlusive disease and countless side effects.
“As a family, we have spent birthdays, Christmas and most holidays in the hospital." Leonardo’s mum, Yana
As he came to the end of frontline treatment, the family were devastated to discover a small bump at the back of Leonardo’s head which grew bigger over four weeks. After a number of urgent scans, it was confirmed that he had relapsed.
“Our hopes, our future, our whole world all came crashing down, again. It is terrifying to find ourselves in what we considered just recently to be our worst nightmare. We have never experienced such an all-consuming fear, such helplessness, such heartbreak.”
Treating high-risk neuroblastoma successfully is particularly challenging. In Leonardo’s case, where his neuroblastoma has returned, options available for treatment on the NHS become more limited. Leonardo is currently receiving cycles of BIT chemotherapy to control the cancer and stop it from spreading. The family hope that once Leonardo completes BIT chemotherapy, he will be able to travel to Rome to be treated using CAR T cell therapy with the hope of getting back into remission.
Relapsed neuroblastoma can be aggressive and unpredictable, but there are potentially promising clinical trials available, and the family is being supported by their treating team and Solving Kids’ Cancer UK to identify the right treatment for Leonardo.
“We thought we would never be asking for help in such a public way. It’s so scary putting your child, yourself and your family out there but we are desperate to do everything we can to save him. As a family, we are doing all we can so that Leonardo can access treatment not available on the NHS, but it may not be enough, especially if we would need to access other clinical trials down the road, which all come at a considerable cost. A donation from you could help Leonardo and give him a chance to live.” Leonardo’s parents, Yana and Lorenzo
Funds raised will go towards helping Leonardo and his family. If Leonardo 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 high-risk neuroblastoma, like Leonardo, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
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