Family fundraising to prolong life of only child, 19, with rare brain cancer

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Family fundraising to prolong life of only child, 19, with rare brain cancer

Stephanie Danziger looking to the community to help sick 19-year-old son Joel in a bid to generate 'some real and precious hope for his future'

Friends of a Jewish couple from north London were this week helping them raise awareness of a campaign to prolong the life of their only child.

Stephanie Danziger’s 19-year old son Joel was diagnosed with a lethal form of brain cancer last year, just two weeks after he got the grades he needed to study at university, in news that turned the family’s life upside down.

Steph and her partner Ian, together with Joel’s school friend Tom, are now trying to generate “some real and precious hope for Joel’s future, while at the same time make a meaningful contribution to cancer research in the long term”.

In August last year, aged 18, Joel went to his GP suffering from severe migraines. The GP sent him to an optician, who saw retinal haemorrhaging and sent him straight to hospital. Within days he had emergency brain surgery to remove a tumour the size of a golf ball.

Although the operation was successful, Joel was soon diagnosed with glioblastoma, an aggressive cancer that attacks the brain or spinal cord. Average life expectancy is just 18 months, with vanishingly few living longer than five years.

“Since last September Joel has received excellent care from the NHS at The Christie Hospital having radiotherapy, chemotherapy and a clinical trial of immunotherapy,” said Elisa Bonaminio, a family friend organising the crowdfunding.

“Joel has bravely endured all the treatments but worries that any headache is the first sign of the cancer returning. COVID-19 has made it even more difficult to enjoy the time that he has to spend with his friends and family.”

His family said Joel is “determined to live a normal life for as long as he possibly can” and after having had to postpone his first year of university, is set to begin this month, having already raised almost £20,000 for Teenage Cancer Trust.

“Now, in return for his enormous courage and grace, those who know and love him are working to do the very best we can for him,” said Steph’s friend Stella Klein.

“We’re trying to raise money to pay for a very promising, pioneering treatment that might help to see Joel through to the end of his studies.” That pioneering treatment revolves around dendritic cells, which play a key role in tumour immunity and therefore cancer immunotherapy.

“Essentially this is a personalised cancer killing vaccine made from Joel’s own residual tumour tissue,” said Bonaminio. “Given that Joel’s treatment to-date has only been palliative, this is the most promising way of actually prolonging his life.”

The treatment is not yet available on the NHS, she said, and “because it is bespoke for Joel we will need to raise over £400,000 for the vaccine to be manufactured by a biotech company in Cambridge and for him to receive the treatment from a leading brain tumour professor from Kings College Hospital in London”.

As of Thursday, the day Joel started university, they had raised £52,000. Klein described the family’s battle for Joel’s final years as “brave and inspiring,” as she recalled meeting Steph at university back in the 1980s.

“Her family story touched my heart and has stayed with me ever since,” she said. “Second daughter of two Kindertransport evacuees who married and settled in Wembley in the late 1950s, Steph lost her mother to cancer when she was just 13.”

As the friends moved on from university and began their careers – Klein’s in London, Steph’s in Manchester – she said: “It was easy to understand the mixed feelings Steph had about raising a family of her own under the shadow of early loss. Finally, though, at the age of 37, Steph and her partner Ian took the plunge and their beautiful son Joel was born.”

She described Joel, a former child actor, as “bright and charming, the life-and-soul-of-the-party”, adding: “I hope this family’s story will be of interest to the community, and I hope people help.”

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