Small in Size, Big in Heart

Javier, Age 10

At first glance, 10-year-old Javier Tan may not be immediately apparent to an onlooker that he is the elder of Ms Vivian Ho's two sons. Javier is smaller-built than his brother, Javen, who is four years his junior. He is also exceptionally tanned, which sometimes draw questions from others. If people ask, Vivian, may joke that the boy loves heading outdoors. Unknown to most people, Javier is diagnosed with Fanconi Anaemia (FA), the commonest type of inherited bone marrow failure syndrome.

Research has shown that at least 60 per cent of people affected by Fanconi Anaemia are born with at least one physical anomaly. For Javier, it is his short stature, an extra right thumb and skin discoloration which gives him a suntanned look. When Javier was 3 years old, blood tests showed that he had low levels of all three types of blood cells: Red blood cells, which carry oxygen to the body's tissues; white blood cells, which fight infections; and platelets, which are necessary for normal blood clotting.

A stem cell transplant - which replaces defective bone marrow with a healthy donor's - was Javier's hope of increasing his life expectancy beyond the projected median of approximately 30 years old. In preparation for his first stem cell transplant in December 2014, Javier, then 7, underwent chemotherapy and radiation therapy to weaken his immune system. This helps to prevent it from attacking the donated cells after the transplant. His mother saw that Javier was losing his hair, so had his head shaved bald. Unfortunately, Javier was struck by a bone infection that same month, which threatened an amputation and caused him excruciating pain. Vivian recalled how the ordeal was over only after 12 continuous weeks of regular wound debridement and medication.

Javier had his second stem cell transplant in January 2015, using his father's donated blood. This time, he developed graft versus host disease affecting his skin. Vivian said, "He wore special clothes that kept his skin moist to help alleviate his itch. I called him the cream person because we applied steroid cream all over his body too. "I knew that he felt frustrated then, yet I could also see that he is a strong boy. He is cooperative when it comes to receiving treatments and I always tell him that tomorrow will be a better day."

During the eight months that Javier was warded at KK Women's and Children's Hospital (KKH), he became close to the hospital staff. He entertained the nurses by moving his limbs and dancing for them. He also kept in touch with younger brother, Javen, through video-conferencing and wrote a letter home every week. Vivian also got Javier to keep a journal in his ward to pen his thoughts and collate the well-wishes that others wrote for him.

Javier returned to school in April 2016. Club Rainbow's social worker, Sylvia, helped to find a private tutor for Javier, then in Primary 3, to catch up with his schoolwork. In December 2015, the family of four went on a three-day, two-night cruise to Malaysia with Club Rainbow. Vivian and her husband found the health talks useful while the two brothers enjoyed the games. When asked if she has any messages for parents with chronic illnesses, Vivian has this piece of advice, "Always look ahead for your kids and yourselves".