After being diagnosed with spinal muscular atrophy (SMA), a fatal and terminal disease that paralyzes the body, Josy spent 17 years of her life living in the hospital. She has spent her entire life using a wheelchair and life support machines, such as a ventilator, suction machine and oximeter. SMA could be a deadly disease as it is the leading cause of death for 2 years old babies with genetic disease. Even if the patient survives, the patient’s body will degenerate until death. It was not until 2016 that the first and only drug was invented in the United States to treat her condition. While many of the patients around the world could be treated, Hong Kong had no access to the treatment. As a result, many families struggled.

However, Josy and her family decided to take action. They united with a few parents to co-found a campaign in 2017, and urged the government to import a life-saving drug for children dealing with SMA. Fortunately, their voices were heard as the authority approved the treatment implementation. This was only the first step in saving the lives of people living with SMA; there remains a long road ahead towards creating a society where people with disabilities can live fully, equally and inclusively.

Her own life devoured by the disease, Josy recognizes the need to raise awareness of disability rights in Hong Kong. She feels it is her duty to help children with disabilities and their families to pursue their dreams and achieve wellbeing. As a graduate of the University of Hong Kong, she has been the Honorary Secretary for Paediatric Home Respiratory Support Society since 2017. She also organized events at schools in the hopes of promoting equality and inclusiveness for children with respirators and other challenges. She was also a sustainability intern at Encompass Hong Kong.

In the future, Josy looks forward to starting up an NGO that focuses on rare diseases and social issues in order to unite passionate individuals who share the same vision of making Hong Kong an equitable place for future generations. Through Resolve’s Social Justice Fellowship Program, Josy hopes to acquire different skills and gain knowledge of start-up procedures, fundraising methods, teamwork development, stress relief, charity management, and more.

In her spare time, Josy loves to listen to music, as well as read and write creative works. She also offers voluntary emotional and learning support to those in need.