Parents pay tribute to Hugo Donaldson after long fight with rare cancer
Hugo Donaldson, a 12-year-old boy, has passed away following a courageous battle with Stage 4 Alveolar Rhabdomyosarcoma, a rare and aggressive childhood cancer. His parents, Aaron and Samantha, described him as a joy and a privilege to have in their lives, noting that he was a loyal friend who remained true to himself throughout his illness.
A Journey of Hope and Relapse
Hugo was first diagnosed with the disease at age nine. To combat the cancer, he endured a brutal treatment regimen consisting of 28 sessions of radiation and nine rounds of high-dose chemotherapy.
In August 2024, the family received the news they had hoped for when Hugo was declared cancer-free. However, while on maintenance therapy just months later, he relapsed in March of the following year.
By September, scans indicated further growth of the cancer. The progression was rapid; within days, Hugo went from experiencing a sore leg to being wheelchair-bound and in severe pain.
The Race for Life-Saving Treatment
With doctors in New Zealand having exhausted all available options, the family began an urgent effort to fund a clinical trial in the United States. Through Givealittle, the community raised more than $449,000.
Hugo was accepted into a Car-T therapy clinical trial and underwent the treatment in January. Despite the hope surrounding the procedure, Aaron stated that the treatment unfortunately did not work for Hugo.
Final Days and Family Legacy
Hugo returned to New Zealand in March, where doctors found the cancer had shown “quite a bit of progression.” Despite this, the family spent meaningful time together, including a holiday at theme parks on the Gold Coast.
His final decline happened “quickly and unexpectedly.” After attending a friend’s birthday party on a Saturday, Hugo complained of back pain on Sunday, which soon impacted his breathing. He was admitted to the hospital and moved to the Paediatric Intensive Care Unit (PICU) before he died.
His parents highlighted the strength of Hugo’s 10-year-old brother, Louis, who remained one of the strongest people in the room during Hugo’s final hours.
Advocating for Systemic Change
While expressing gratitude for the oncology and Starship teams, Hugo’s parents are now calling for clinical trials to be more accessible within New Zealand.
Aaron emphasized that the burden of raising significant funds or travelling for potentially life-saving treatment creates an immense barrier for families. They hope their experience will lead to a system where such treatments are more readily available locally.
Frequently Asked Questions
What was Hugo Donaldson’s medical diagnosis?
Hugo was diagnosed at age nine with Stage 4 Alveolar Rhabdomyosarcoma, which is described as a rare and aggressive childhood cancer.
How much money was raised for Hugo’s treatment in the US?
The family raised more than $449,000 on Givealittle to fund his participation in a cancer trial.
What specific treatment did Hugo receive in the United States?
Hugo underwent a Car-T therapy clinical trial in January.
How can communities better support families navigating the financial and emotional burdens of rare medical crises?