THE GENETIC CODE OF LOVE

    This story begins in 1995, in Penghu - an archipelago located 50 km west of Taiwan. There, a newborn named Kenny came into the world, but his arrival was far from ordinary. Shortly after birth, doctors diagnosed him with Osteogenesis Imperfecta (OI), commonly known as brittle bone disease, after multiple fractures occurred during delivery. OI is a rare genetic disorder that causes bones to break easily, often without an obvious cause.

    Kenny’s childhood was challenging. In his early years, he suffered several fractures. At age 9, he began receiving injections to increase his bone density. These treatments had to be transported from Kaohsiung, a much larger city 130 km away  -  a process that was difficult and often complicated. Despite these obstacles, Kenny persevered through numerous surgeries and ongoing medication.

    At age 14, Kenny was officially recognized as a patient with a rare disease, making him eligible for Taiwan’s National Health Insurance major illness coverage. This removed the need for him to pay the copayment of future treatment. His determination also shone through academically. With the support of his educators, Kenny became a member of the Taiwan Foundation for Rare Disorders (TFRD) and went on to earn three scholarships for his outstanding performance in school.

    Today, Kenny works in Taipei as a network management engineer and lives independently. However, as the years have passed, his bones have shown signs of deformity, and he now uses a wheelchair to improve mobility. Through TFRD’s accessible taxi subsidy program, he has gained greater financial and personal independence.

    Kenny’s ambitions extend beyond his career. He dreams of starting a family and wants to ensure his future children will be healthy. To do so, he has been working closely with medical specialists and genetic counselors. Because there are many subtypes of OI, Kenny needs precise genetic molecular testing. Recently, thanks to funding from TFRD, he underwent whole exome sequencing — a highly accurate genetic test. With his blood sample now analyzed, Kenny is one step closer to planning the future he envisions, supported by the same determination that has defined his life since birth.

Translator: Jia-Yi Huang
Reviewer: Giancarlo Rotolo