Hope At Heart

Lim Jun Rong, Age 5

Lim Jun Rong was born with an Arial Septal Defect (ASD) & Ventricular Septal Defect (VSD), or a congenital condition more commonly referred to as “a hole in the heart”. At only 11 months, Jun Rong had to undergo an open-heart operation to surgically close both the holes which would otherwise impede his physical growth.

"When the heart isn't beating well, it gets tired. So when he's drinking milk, you can see that he's perspiring - it gets very tiring, so he gives up drinking. He wasn't getting the nutrition he needs," recalls Jun Rong's father, Mr. Lim. "His weight loss was an indication that there were no signs of the holes closing, so [the doctors] decided it was time for the surgery," adds his mother, Mrs. Lim. "He had at least 7 tubes running in and out of his body... It was quite painful to see."

The experience has been a test of courage and inner strength for both parents and their youngest son. "He's been through a lot," sighs Mrs. Lim, scrolling through old photos of his surgery which she had captured on her phone. "I took these because I thought it's very meaningful - I want to let [Jun Rong] to know that he went through such a major challenge, at a very young age."

In spite of the challenges he has faced, Jun Rong is a happy boy. The 4-year old toddler is chatty and cheerful, blissfully immersed in his collection of toy cars and helicopters. "He's evolving - he used to be pretty shy. He's a lot more sociable now. When he sees a stranger, he'll say 'Hello!'," laughs Mr. Lim. They accredit this improvement to the speech development classes which Jun Rong has been attending.

However, the young boy has yet another larger hurdle to face in time to come. While monitoring his heart condition, the doctors had also discovered that Jun Rong has Neurofibromatosis Type 1 (NF1), a rare genetic disorder. It is characterized by the development of benign tumours and "cafe-au-lait spots" (brown discoloration) on the skin.

"It's hard to say [what I felt]. Initially I asked myself why he was like this - his 2 older brothers are totally normal... Nobody can really explain, it doesn't run in the family," Mrs. Lim shares. Recalling a recent newspaper article where a man with NF1 was publicly shamed and discriminated against, it is hard for her to hold back her tears. As treatment for NF1 can only be properly administered once Jun Rong’s condition matures, the situation plays out like a tense psychological waiting game, burdening the mind.

For now, the family has developed a strong sense of resilience. Between juggling the demands of challenging career and looking after her 2 other sons while monitoring Jun Rong's condition, Mrs. Lim has discovered a new inner strength, which is characteristic of the modern career woman. "It's actually put a lot of burden on us; but it's okay, we can survive with that," affirms Mrs. Lim. "We are prepared to do whatever we can for him."

Events organized by Club Rainbow, such as the annual Royal Caribbean Cruise and the movie screening of the animated film “The Minions”, have presented the family some welcome respite and also opportunities to bond. "I appreciate Club Rainbow for arranging activities like these - it's not something we would otherwise find time to do ourselves," admits Mrs. Lim. "It's a controlled environment," adds Mr. Lim. "If he were to throw a tantrum, the understanding would be there." Exposure to other families with children of special needs has also taught their older sons the importance of compassion and to have a greater appreciation of life.

For both parents, their hopes for the future are simple: for Jun Rong to grow up resilient, and for the ties of brotherhood amongst their kids to remain strong. "I hope that he grows up a happy child, that's all I ask for," smiles Mrs. Lim.