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Less than $165,000 is now needed to pay for potential life-saving medical care for a courageous east Auckland 11-year-old boy who has been battling a rare cancer for two years. Monetary contributions donated to the Givealittle online page for Hugo Donaldson of Beachlands totalled $335,979 on Wednesday morning, given by 5414 donors. The Donaldson family requires $500,000 to pay for what’s described as “a pioneering cancer trial in the United States” that may provide Hugo a lifeline. He has Stage 4 Alveolar Rhabdomyosarcoma, a rare and aggressive childhood cancer that only occurs in one to three New Zealand children each year. If the fundraising attempt is successful, Hugo would be one of only eight children globally who are eligible for the treatment. Hugo’s cancer battle has been excruciating, and after nine rounds of high-dose chemotherapy and 28 sessions of radiation, he was declared cancer-free in August last year. Months later, he relapsed while still on maintenance therapy. Aaron and Samantha Donaldson, Hugo’s parents, say New Zealand doctors have now exhausted all available curable options. “Hugo has fought so hard, but the cancer keeps coming back,” says Aaron. “This [US] trial represents his best, and perhaps only, chance at survival.” Aaron says Hugo has been accepted into a CAR T-cell clinical trial at Texas Children’s Hospital in Houston. He says the treatment, which uses the body’s immune system to fight the cancer, is given free as part of the study, though hospital care, travel and living costs must be paid upfront. To make the trip possible, the family is making every effort possible to raise the $500,000. “We know of at least one child with the same type of cancer who received a similar version of this treatment at the same hospital and is now in long-term remission,” Aaron says. “It gives us hope that Hugo might have that same chance.” Dr David Steffin, the associate chief of the Cell Therapy and Bone Marrow Transplant Programme at Texas Children’s Hospital, says: “We’re looking for a cure. This clinical trial is the only one of its kind in the world for treating solid tumours using CAR T-cell therapy. “We’ve welcomed patients from across the United States, Europe and New Zealand, all facing cancers that conventional treatments can no longer control. “What makes this approach so promising is the specific marker we target exists on tumour cells but not on healthy tissue, which allows us to attack the cancer without causing unnecessary harm,” says Dr Steffin. “Over the past several years, we’ve worked to make these cells stronger and more effective. “We’re now seeing some remarkable outcomes, with children who have undergone multiple rounds of chemotherapy now back at school and living their lives again. “The progress we’re seeing is extraordinary. My hope is that solid tumours will one day follow the same path as leukaemia and lymphoma, where durable cures and long-term remission become the norm, not the exception.” The programme Dr Steffin leads is providing a range of cell-based therapies that aim to treat conditions by repairing or replacing malfunctioning cells. They include new and emerging immunotherapies such as CAR T-cell therapy that can be tailored to individual patients and designed to enhance or modulate the body’s immune response to fight cancer or treat autoimmune diseases. The therapy Hugo is seeking involves extracting his blood in New Zealand and sending it to the US, where scientists will modify his T-cells to recognise and destroy cancer cells. The process takes up to six weeks, after which Hugo and his parents will go to Houston for low-dose chemotherapy, followed by the CAR T-cell infusion over five weeks. Even though they have full medical insurance, the family’s policy does not cover overseas care. They have applied to withdraw KiwiSaver funds, extended their mortgage and are selling assets, but without the public’s help, they fear Hugo won’t make it to treatment in time. Samantha says the most difficult part is protecting their son from the seriousness of his situation. “He knows, but we don’t tell him everything. He’s just a little boy who wants to get better and play like other kids. “We’re doing everything we can to keep his hope alive.” Donations for Hugo Donaldson can be made at Givealittle: https://givealittle.co.nz/cause/the-donaldsons-continue-to-fight Aaron and Samantha say if the fundraising goal is not achieved or Hugo’s condition stops him from travelling, Givealittle donors will be offered a refund (less platform fees) or can choose to redirect the money to other treatment-related care. “This is our last shot,” says Aaron. “We hate having to ask for help, but if there’s a chance this trial could save Hugo’s life, we have to try.” For an earlier Times’ story about Hugo Donaldson’s struggle with cancer, read: https://www.times.co.nz/news/brave-boys-second-battle-with-cancer
