A 4-year-old boy from Bushey, Hertfordshire, has been diagnosed with a rare form of brain cancer, just months before his mother was also diagnosed with stage 3 breast cancer.
Raffi Starkowitz was diagnosed in April with Group 3 large cell anaplastic medulloblastoma, one of the most common malignant brain tumors in children, which originates in the cerebellum and can spread to the central nervous system. Raffi underwent a 10-hour surgery at Great Ormond Street Hospital in London to remove the 5 cm tumor, followed by several months of chemotherapy.
Shortly after Raffi’s diagnosis, his mother, Nicky Starkowitz, a pediatric nurse at Northwick Park Hospital, was diagnosed with breast cancer with three growths detected via MRI. She has since undergone a mastectomy and is receiving chemotherapy at Royal Free Hospital in London.
The family has launched a GoFundMe campaign to raise funds for Raffi’s DFMO (difluoromethylornithine) treatment in the U.S., which is part of a clinical trial at Penn State Children’s Hospital. DFMO, approved by the FDA, targets high-risk neuroblastoma by blocking polyamine production. The campaign has already reached its initial £200,000 goal, giving Raffi a chance at cutting-edge treatment.
Nicky described the challenges of Raffi’s chemotherapy, including severe side effects such as hair loss, fatigue, hearing loss, intestinal inflammation, shingles, and repeated infections due to a weakened immune system. She emphasized that any fever requires immediate hospitalization to prevent sepsis.
Despite the hardships, the family remains hopeful. “To be a part of a trial is really exciting for us, because it gives hope that something more can be done rather than just taking a chance on his cancer returning,” Nicky said. She credited her husband, Neil Starkowitz, for his support in caring for Raffi and their daughters during this difficult time.
The family is focused on giving Raffi the best possible chance, facing each day with determination and hope. “We just want to do everything in our power to give him the best chance he deserves,” Nicky said.
