In loving memory of Isaac Hersi

We are devastated to share the news that Isaac has sadly passed away. Our thoughts are with his family.

Isaac's story

Isaac is adored by everyone who has met him, especially his little brother. He enjoys playing with his friends, swimming, reading stories and watching Marvel films – Spiderman is his favourite. But this sweet, kind and loving child was diagnosed with high-risk neuroblastoma in May 2018, sending his family’s world crashing down.

“When the word cancer arrived in our lives we were totally and completely devastated and broken. We didn’t know much about neuroblastoma but Isaac has stage 4, which means the tumour cells have already spread to other sites in the body,” says mum, Zamia.

In May 2018 Isaac was in the United Arab Emirates with his family, who noticed he had become really constipated.

He was treated for it by multiple hospitals, but all the medication they prescribed did not make him better.

So they continued to push for further diagnosis and he was diagnosed with having an abdominal mass. Initially, it was thought Isaac had Burkitt lymphoma but after a few days, he had a biopsy and doctors took bone marrow and inserted a Hickman line.

Once Isaac was diagnosed with stage 4 high-risk neuroblastoma he remained in hospital as his health started to deteriorate rapidly. He suffered from internal bleeding and required multiple blood transfusions, CT scans, ultrasounds and MRI scans.

Surgery was not an option and he was monitored closely. “We felt so hopeless as parents,” says mum, Zamia. “This was probably our lowest point.”

But Isaac started to improve. He slowly learned to walk again and managed to take some sips of a drink. He had suffered from severe malnutrition as he had to be nil-by-mouth for so long, so a nasogastric tube was inserted to slowly start to feed him again. “Our once happy, bubbly child was now shy and socially withdrawn, he looked completely different,” continues Zamia.

It was then that Isaac started on eight rounds of aggressive chemotherapy during which he showed “amazing spirit, laughing and joking with the doctors and nurses.”

Neuroblastoma is a rare childhood cancer that affects around 100 children in the UK each year. 40-50% of children diagnosed with high-risk neuroblastoma will not respond completely (this is known as refractory) during standard treatment, or the cancer will come back (this is known as relapse) after. If a child does relapse with neuroblastoma, their chances of long-term survival are less than 10%.


Isaac relapsed in April 2019, devastating his family again. They decided to travel to New York for Isaac to receive treatment, which is being paid for through health insurance.

Giving Isaac a chance

“Although this has been a complete nightmare for us all, we’re so grateful to all of Isaac’s doctors, nurses and all the staff at the hospital who have all worked so hard to get him where he is today,” continues Zamia.

“We’re praying and hoping that Isaac will be fortunate enough to get to remission at the end of his treatment and our mission is to do everything we can to try and stop this horrible cancer from returning and give Isaac the best chance possible to grow up and have a normal childhood with his baby brother.”

Isaac’s fundraising campaign

As Isaac’s family know, high-risk neuroblastoma is an aggressive and complex cancer to treat. The family is raising funds in case he needs to access treatment not available on the NHS to either keep the cancer from returning – they are particularly interested in the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York – or clear the disease if his treatment, unfortunately, doesn’t go to plan.

Please help give Isaac the best chance of beating this devastating disease.

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