Family Raises £100,000 for DFMO Access to Prevent Neuroblastoma Relapse in Two-Year-Old UK Girl
Key Insights
Two-year-old Florence from Stourbridge completed 18 months of intensive treatment for high-risk neuroblastoma (search), including chemotherapy, surgery, radiotherapy, immunotherapy, and two stem cell transplants.
Her family is now raising £100,000 to access difluoromethylornithine (search) (DFMO), a relapse-prevention drug available in the US, Australia, and Switzerland but not approved on the NHS.
Florence's 12-hour tumor resection surgery removed 90-95% of a 30cm tumor weighing approximately 2kg, though she developed pulmonary hypertension (search) as a treatment complication.
At just two years old, Florence from Stourbridge has completed an arduous 18-month treatment journey for high-risk neuroblastoma (search) — and now her family is racing to raise £100,000 for a relapse-prevention drug unavailable through the NHS.
Florence was diagnosed on 18 November 2024, when a 30cm tumour was discovered in her abdomen with disease also present in her spine. The diagnosis came after weeks of being told her symptoms were due to severe constipation, according to her mother, Anna.
"She's done absolutely amazing. So for her to finish treatment, we're so proud of her. She's been through so much," Anna said.
A Grueling Treatment Regimen
Florence's frontline treatment encompassed the full spectrum of high-risk neuroblastoma (search) therapy: chemotherapy, a 12-hour tumour resection surgery, two stem cell transplants, radiotherapy, and immunotherapy. During the marathon surgery, surgeons removed 90–95% of the tumour — approximately 2kg with blood flow — and Florence also underwent removal of her left kidney. She was subsequently ventilated in intensive care.
The intensity of treatment brought serious complications. Following busulfan high-dose chemotherapy, Florence developed pulmonary hypertension (search), a form of cardiac disease. Anna noted that this complication "wasn't something that had been seen before at Birmingham Children's Hospital in this context," prompting specialist consultation from Great Ormond Street Hospital.
At one point, clinicians warned the family that Florence might not be able to proceed with radiotherapy because the daily general anaesthetics required could pose life-threatening risks given her pulmonary hypertension (search). However, supported by the intensive care team, she successfully completed all 12 days of radiotherapy under general anaesthetic.
Florence also experienced significant respiratory complications throughout treatment, requiring intensive care on three further occasions for respiratory support including ventilation. By December 2025, home oxygen was arranged, allowing her to complete immunotherapy at home. Her pulmonary hypertension (search) is now managed with medication, though she still requires home oxygen and has further respiratory tests planned.
The Race for DFMO
Despite completing frontline treatment in April, Florence's family faces the sobering reality that the chances of relapse remain "quite high," as Anna described, even after a child finishes other treatment.
The family is now seeking access to difluoromethylornithine (search) (DFMO), a medication designed to reduce the risk of neuroblastoma (search) recurrence. DFMO is currently available in the United States, Australia, and Switzerland, but is not approved for use on the NHS.
"For us... it's another opportunity to keep the cancer away," Anna explained. "We don't have much or any control throughout this journey, but for us it was something we wanted Florence to have."
According to Neuroblastoma UK (search), Florence was due to start DFMO as a relapse-prevention treatment, but after the drug was withdrawn from the UK, the family is now exploring private treatment options to access it abroad.
A Child Defined by Resilience
Throughout her ordeal, Florence has maintained what her family describes as an indomitable spirit. "And yet despite all of this — every admission, every setback, every side effect — she still somehow comes out smiling, playing, and full of life every time," Anna shared through Neuroblastoma UK (search).
"She is our sunshine, our Florie, and we are so incredibly proud of her. Cancer does not define who Florence is or who she will grow up to be."