A Family's Unimaginable Double Diagnosis
When four-year-old Raffi Starkowitz began walking unsteadily, his parents initially suspected an ear infection. The reality was far more devastating. The toddler from Bushey, Hertfordshire was diagnosed in April with Group 3 large cell anaplastic medulloblastoma, an extremely rare and aggressive subtype of the most common malignant brain tumour found in children.
The Fight for Raffi's Future
Raffi immediately came under the care of Great Ormond Street Hospital, where he underwent a 10-hour operation to remove a large tumour measuring approximately 5cm. His condition had deteriorated rapidly before surgery, leaving him unable to walk, sit up, and constantly vomiting.
Since the operation, Raffi has endured months of intense treatment including chemotherapy and proton beam radiotherapy at UCL Hospital. The side effects have been severe: "He's lost all his hair, he's had sickness and fatigue, hearing loss, and inflammation in his intestines, which caused a huge amount of pain," explained his mother Nicky, a paediatric nurse at Northwick Park Hospital.
Despite treatment showing positive results in recent scans, doctors have warned the family that the risk of relapse remains extremely high, with no preventative treatments available in the UK.
A Mother's Parallel Cancer Battle
In a cruel twist of fate, just weeks after Raffi's diagnosis, his mother Nicky discovered she had stage three breast cancer. The mother-of-three noticed an inverted line on her breast in August, with subsequent scans revealing three growths in her armpit and breastbone.
Nicky underwent a mastectomy and reconstruction at the Royal Free Hospital during the same week Raffi received his first cycle of chemotherapy. "Next week, we are both due to have chemo – but at least if we are going to feel rubbish, we can snuggle at home and feel rubbish together," she said, demonstrating remarkable resilience.
Transatlantic Hope: A Pioneering Clinical Trial
The family has been thrown a lifeline by Penn State Children's Hospital in Hershey, Pennsylvania, which has accepted Raffi onto a new trial using DFMO (difluoromethylornithine) drugs. This treatment has shown promising results in helping children with high-risk cancers remain in remission.
"To be a part of a trial is really exciting for us, because obviously it gives us hope something more can be done, rather than just sitting back and taking a chance on his cancer returning," Nicky explained.
The family launched a GoFundMe campaign that has already raised more than £200,000 to cover treatment costs, travel, and accommodation for trips to America. They plan to visit the United States every three months for treatment, or monthly if coordination between UK and US doctors proves impossible.
Raffi's parents have pledged that any surplus funds will be donated to medical research into medulloblastoma, hoping to help other families facing similar battles. With both mother and son continuing their treatments, the family says they are "living scan by scan, and day by day" while maintaining hope for Raffi's recovery.
