A mum-of-three has revealed she received the ‘shock of her life’ after her son was diagnosed with a rare and aggressive brain cancer, as a fundraiser to support the family has now reached more than £12,000.
Raffi Starkowitz, aged three, from Bushey, Hertfordshire, has already undergone major surgery at Great Ormond Street Hospital to remove a tumour and now faces months of intense treatment including chemotherapy and radiotherapy.
Cancer specialists diagnosed Raffi earlier this month with large cell anaplastic medulloblastoma, an extremely rare subtype of the most common malignant brain tumour found in children.
Concerned parents Nicky, a paediatric nurse at Northwick Park Hospital in Harrow, and Neil, an IT project manager, say they are taking each day ‘step by step’ as a family friend is gearing up to run an ultra-marathon from London to Brighton to raise financial support for them.
Consultant anaesthetist Jamie Gross, who works with Nicky and is also from Bushey, is set to run an epic 100km next month. Every penny he raises will go towards easing the burden for Nicky and Neil who face having to take months off work while also paying for medical expenses and additional care for their two older daughters, Ella, 10 and Talya, seven.
Nicky said she was especially taken aback by the speed at which the large tumour has grown, with doctors believing it had only been there weeks, not months, before the youngster began showing symptoms on March 31.
She told Jewish News: ‘The day before we found anything out he was playing rugby and running around. But while we didn’t say it to each other, Neil and I both thought his motor skills looked a bit off at points through the day.
‘Raffi was helping Neil wash the car and he thought he looked a bit clumsy but dismissed it because he was wearing wellies.
‘Then the next day after Raffi was dropped off at nursery, they called within an hour to say he looked a bit wobbly. I thought it might have been an ear infection or post-viral symptoms, so I took him to the GP but after looking Raffi over they told me to go straight to hospital.’
Nicky took Raffi to Northwick Park, where one of her colleagues checked him. When she was shown a video of how he normally walks compared to how he was that day, the doctor recommended blood tests and an MRI, which eventually showed that he had hydrocephalus, a fluid build-up on the brain, as well as a sizeable abnormal mass measuring around 5cm.
Within 48 hours, Raffi’s symptoms had progressed to him being sick, unable to walk or sit up and becoming extremely drowsy.
Five days after his symptoms first began, Raffi was transferred to Great Ormond Street Hospital, where he underwent an 8-hour operation to remove the tumour.
‘It all happened so quickly, within just five days. While he was in surgery we had no idea what kind of tumour it was, if it was benign or cancerous.
‘When we were told it was a medulloblastoma that would have been enough of a shock, but then we were told he had a very rare form of it and we were having to deal with that.
‘I look after young children with serious illness, but I never imagined having to look after my own three-year-old in this way. I think it was traumatic for him, because there was no time at all to prepare him for what was happening. We’ve just had one thing after another thrown at us.’
Only 52 children in the UK are diagnosed every year with medulloblastoma, including just a handful of those with the same rare subtype that Raffi has.
While Raffi’s tumour has been removed, Nicky will take time off work as he faces nine months of intensive treatment that will require frequent hospital stays and recovery at home.
‘Two weeks after his operation he’s doing really well and we’ve had a bit of Raffi and his little cheeky personality back. But we know there’s a long road ahead and the treatment could affect him in the long term.’
She added that the family has been ‘overwhelmed’ by the support they have been given.
‘We’re just lost for words over how supportive everybody has been and especially for what Jamie is doing for us. It’s unbelievable. We are just so grateful.’
