JOHOR BARU: At just six, Fernando Tan has faced more medical challenges than most people encounter in a lifetime – yet, he continues to embrace life with remarkable resilience.
Born with multiple birth defects including spina bifida, an imperforate anus and hydrocephalus, the boy – fondly called Dodo by his family – lives each day with a stoma bag attached to his body.
(Spina bifida is a condition where the spine and spinal cord do not form properly, while hydrocephalus is a disorder caused by the build-up of fluid in the brain’s ventricles.)
Despite doctors’ bleak prognosis, Fernando is now walking, swimming, playing football and even learning to play the drums.
His mother Wong Chin Hui, 34, recalled the grim words spoken when he was born.
“They said he might lose his ability to walk by age four and would not be able to live a normal life like other children, but we never gave up hope even though he had to undergo five operations, including brain surgery.
“We taught him to walk, sent him for swimming and music classes, and tried our best to keep him as active as possible,” said the mother of two.
Fernando now attends kindergarten where teachers say his learning ability and emotional intelligence match those of his peers.
“He has wonderful supportive teachers. His classmates, who are still too young to grasp his condition, do not treat him differently.
“On the contrary, it is adults who sometimes give him strange looks, and that affects his self-esteem,” Wong said.
She said as Fernando grows older, he has started noticing he is not the same as other children.
He would ask if he can stop wearing the stoma bag.
To help him cope, Wong shows him social media accounts of others living with stoma bags, assuring him he is not alone.
She also documents Fernando’s journey on her social media accounts, sharing clips of him enjoying sports, music and play like any other child.
“When he was first diagnosed, I remember feeling so alone, as if my son was the only one with such health issues.
“I decided to share his story to raise awareness and spread positive messages about people with birth defects, in hopes of uplifting others so they would not feel what I felt back then,” she said.
One of her videos has hit over one million views, drawing heartfelt responses from parents of children with similar conditions.
A homemaker, Wong hopes her son’s resilience will inspire others.
“I want to give hope to others out there that children with birth defects can still lead a positive and active lifestyle,” she said.
With Fernando set to start primary school next year, Wong admits feeling anxious but remains determined.
“We are taking things one step at a time. We will manage that challenge together when it comes, like we always do,” she said.
