Hugo Donaldson’s condition is a rare and aggressive childhood cancer. Photo \/ Supplied<\/p>\n
Scans in September this year revealed further cancer growth. <\/p>\n
Within days, he went from having a sore leg to being unable to walk, wheelchair-bound and in severe pain, a Givealittle<\/a> post said. <\/p>\n His parents, Aaron and Samantha Donaldson, said doctors in New Zealand have exhausted all available options.<\/p>\n \u201cI guess to be brutally honest, very few people cure from this,\u201d Aaron told the Herald. <\/p>\n \u201cHugo has fought so hard, but the cancer keeps coming back. This trial represents his best, and perhaps only, chance at survival.\u201d<\/p>\n Hugo has been accepted into a CAR T-cell clinical trial at Texas Children\u2019s Hospital in Houston, one of only eight worldwide so far selected. <\/p>\n The treatment, which uses the body\u2019s 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.<\/p>\n The family are facing an eye-watering $500,000 bill to make the trip possible.<\/p>\n \u201cWe 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,\u201d Aaron said.<\/p>\n \u201cIt gives us hope that Hugo might have that same chance.\u201d <\/p>\n What is the therapy? <\/p>\n Dr David Steffin, associate chief of the Cell Therapy and Bone Marrow Transplant programme at Texas Children\u2019s Hospital, spoke recently on his social media about the research. <\/p>\n \u201cTo put it bluntly, we\u2019re looking for a cure,\u201d Steffin said.<\/p>\n \u201cThis clinical trial is the only one of its kind in the world for treating solid tumours using CAR T-cell therapy. <\/p>\n \u201cWhat 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.\u201d<\/p>\n Over the past few years, Steffin said there have been some \u201cremarkable outcomes\u201d. <\/p>\n 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. <\/p>\n 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. <\/p>\n Despite full medical insurance, the family\u2019s policy does not cover overseas care.<\/p>\n Hugo\u2019s parents said they have applied to withdraw KiwiSaver funds, extended their mortgage and are selling assets, but without public help, they fear he won\u2019t make it to treatment in time. <\/p>\n \u2018He knows it\u2019s serious\u2019<\/p>\n Aaron said the hardest part is protecting their son and his younger brother from some details of the situation. <\/p>\n \u201cHe knows it\u2019s serious, but we don\u2019t tell him everything. <\/p>\n \u201cHe\u2019s just a little boy who wants to get better and play like other kids. We\u2019re doing everything we can to keep his hope alive.\u201d<\/p>\n Aaron said Hugo is an interesting character who enjoys creating stop-motion videos and coding. <\/p>\n \u201cHe\u2019s got quite a dark sense of humour. If I\u2019m being honest, I think he enjoys playing that up with his medical team,\u201d Aaron said. <\/p>\nHugo Donaldson is one of only eight patients accepted worldwide so far for a CAR T-cell clinical trial at Texas Children\u2019s Hospital in Houston, his father describing the treatment as possibly the last hope. Photo \/ Supplied<\/p>\n
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<\/p>\n