Father Completes 24-Day Journey to Fund Rare Disease Treatment for Daughter

On November 29, 2024, Jeon Yo-seop (전요셉), a 33-year-old father, concluded a remarkable 24-day trek across South Korea, walking 880 kilometers from Busan to Gwanghwamun Square in Seoul. His mission was to raise 4.6 billion KRW (approximately $3.5 million) for his daughter, Sarang (사랑), who suffers from Duchenne Muscular Dystrophy, a rare neuromuscular disease for which there is currently no approved treatment in South Korea.

Jeon began his journey on November 5, departing from Gwangalli Beach in Busan. Excluding Sundays, he walked an average of 40 kilometers each day, passing through cities such as Yangsan, Ulsan, Daegu, Gimcheon, Yeongdong, Daejeon, Cheonan, Osan, and Seongnam before reaching his final destination in Seoul.

Sarang, just three years old, was diagnosed with Duchenne Muscular Dystrophy in May. This condition leads to progressive muscle degeneration, typically resulting in loss of mobility by age 10 and respiratory failure in the 20s, with most affected individuals not surviving past their 30s. While the disease predominantly affects boys, girls have a rare chance of developing it, estimated at 1 in 50 million.

Since her diagnosis, Sarang has struggled with weakened leg muscles, making it difficult for her to walk or run like other children. She often requires assistance to climb stairs and has experienced muscle spasms that necessitate emergency room visits. The only potential treatment available is a gene therapy called Elevidys, developed in the United States, which costs 4.6 billion KRW.

Inspired by a story of a mother in Chile who raised 5.3 billion KRW for her child with the same condition through a similar trek, Jeon decided to embark on this journey himself. Despite having undergone four knee surgeries due to a traffic accident, he persevered. Throughout his walk, he initiated a fundraising challenge called 'Miracle of 10,000 Won,' aiming to gather support from 460,000 people, each contributing 10,000 KRW. His efforts gained significant attention on social media, resulting in donations totaling 1.37 billion KRW.

Upon arriving at Gwanghwamun Square, Jeon expressed gratitude, stating, "It felt like hitting a rock with an egg, and the path ahead seemed dark, but at some point, each person became a small light that gave me strength." He emphasized the urgency for a treatment to be introduced in South Korea and covered by insurance.

Jeon has decided to entrust all collected donations and related materials to the Community Chest of Korea (사랑의열매), ensuring that the funds will be specifically allocated for Sarang's treatment. The organization plans to conduct additional fundraising efforts to reach the 4.6 billion KRW goal.

While some high-cost gene therapies, such as Zolgensma for spinal muscular atrophy, are covered by insurance in South Korea, Elevidys has yet to be approved for use in the country.