Thousands join charity race supporting children with rare diseases

The online "Run for Kids with Rare Diseases" charity race has concluded, attracting more than 1,500 participants and receiving over 2,000 donations. The four-month campaign, held from Feb. 28 to June 30, was organized by VnExpress's Hope Foundation in partnership with vRace and supported by AstraZeneca, WellCare CS Group Vietnam and other partners. It raised nearly VND800 million (US$30,400), all of which will be used to support children with rare diseases.One beneficiary is six-year-old Vy Anh from Ho Chi Minh City, who has Pompe disease, a rare genetic disorder caused by mutations in the GAA gene that leads to glycogen buildup and damages the muscles and heart. She requires lifelong enzyme replacement therapy, with each infusion costing more than VND200 million (US$7,600), or about VND4 billion annually.Because of Vy Anh's severe respiratory failure, her mother, Ngoc Quyen, borrowed money to buy a second-hand ventilator and other medical equipment to care for her daughter at home."The support from the charity race has helped our family pay for additional medical supplies and medications that are not covered by insurance," Quyen said. Representatives of EVF's Internal Audit Department and Hope Foundation present financial assistance to the family of a child with a rare disease. Another beneficiary is 15-year-old Trang Seo Chua, who is receiving treatment at Hue Central Hospital for a rare and aggressive form of blood cancer. His father, Trang A Phu, 39, a member of the Mong ethnic group from Lao Cai Province, said he had borrowed VND50 million from relatives to cover genetic testing and specialized medicines not covered by health insurance.After those funds were exhausted, support from the charity race, together with assistance from the hospital's social work department, helped the family continue the boy's treatment."I will use the money to buy more milk and medicine for my child," Phu said.Rare diseases remain a major challenge for healthcare systems, particularly in Vietnam, where diagnosis is often delayed and treatment costs can exceed what many families can afford.Hope Foundation said it has so far supported eight children facing particularly difficult circumstances, helping reduce the financial burden on their families during treatment, and plans to continue supporting children with rare diseases.Mai Thi Ven, 48, a doctor at Tan Hung Regional Medical Center in Tay Ninh Province and one of the participants, said the event combined physical activity with community support. Employees and doctors at the National Children's Hospital receive awards at the "Run for Kids with Rare Diseases" event. The race also attracted doctors, lecturers, students and running clubs from organizations including the National Children's Hospital, FPT Polytechnic College, the FPT for Community Fund, FPT Long Chau and the Super Night Run community. Participants logged a combined total of more than 250,000 kilometers.The campaign was also supported by Miss Universe Vietnam H'Hen Nie and musician Hua Kim Tuyen."Everyone has their own way of contributing to the community while staying active. By joining the race, participants are helping the Hope Foundation ease the financial burden on families of children with rare diseases," H'Hen Nie said.Readers who want to join Hope Foundation's fund-raising campaign for children with rare diseases can send their support here.