Hugo Donaldson’s condition is a rare and aggressive childhood cancer. Photo / Supplied
Scans in September this year revealed further cancer growth.
Within days, he went from having a sore leg to being unable to walk, wheelchair-bound and in severe pain, a Givealittle post said.
His parents, Aaron and Samantha Donaldson, said doctors in New Zealand have exhausted all available options.
“I guess to be brutally honest, very few people cure from this,” Aaron told the Herald.
“Hugo has fought so hard, but the cancer keeps coming back. This trial represents his best, and perhaps only, chance at survival.”
Hugo has been accepted into a CAR T-cell clinical trial at Texas Children’s Hospital in Houston, one of only eight worldwide so far selected.
The treatment, which uses the body’s own immune system to fight cancer, is provided free as part of the study but hospital care, travel and living costs must be paid upfront.
The family are facing an eye-watering $500,000 bill to make the trip possible.
“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 said.
“It gives us hope that Hugo might have that same chance.”
Hugo Donaldson is one of only eight patients accepted worldwide so far for a CAR T-cell clinical trial at Texas Children’s Hospital in Houston, his father describing the treatment as possibly the last hope. Photo / Supplied
What is the therapy?
Dr David Steffin, associate chief of the Cell Therapy and Bone Marrow Transplant programme at Texas Children’s Hospital, spoke recently on his social media about the research.
“To put it bluntly, we’re looking for a cure,” Steffin said.
“This clinical trial is the only one of its kind in the world for treating solid tumours using CAR T-cell therapy.
“What makes this approach so promising is that 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.”
Over the past few years, Steffin said there have been some “remarkable outcomes”.
Hugo Donaldson’s family are facing a $500,000 bill to make the trip to Houston in the hope of successfully treating his Stage 4 Alveolar Rhabdomyosarcoma. Photo / Supplied
The therapy Hugo needs involves extracting his blood in New Zealand and sending it to the United States, 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 travel to Houston for low-dose chemotherapy, followed by the CAR T-cell infusion over five weeks.
Despite full medical insurance, the family’s policy does not cover overseas care.
Hugo’s parents said they have applied to withdraw KiwiSaver funds, extended their mortgage and are selling assets, but without public help, they fear he won’t make it to treatment in time.
‘He knows it’s serious’
Aaron said the hardest part is protecting their son and his younger brother from some details of the situation.
“He knows it’s serious, 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.”
Aaron said Hugo is an interesting character who enjoys creating stop-motion videos and coding.
“He’s got quite a dark sense of humour. If I’m being honest, I think he enjoys playing that up with his medical team,” Aaron said.
The family have launched a Givealittle campaign to help them raise the funds needed.
“We hate having to ask for help, but if there’s a chance this trial could save Hugo’s life, we have to try.
“The stats have never been in Hugo’s favour, but we’ve always held on to hope knowing that people have done it, so it can be done,” Aaron said.
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