PUCHONG: An ordinary chair bought from IKEA has become part of contractor Kong Hean Fui’s daily struggle to protect his 15-year-old son from hurting himself.
He has adapted it with makeshift straps to help keep Kong Wei Yang safe when involuntary movements take hold of his body. The force can be so intense that the restraints repeatedly need repairing or replacing.
Yet the chair cannot always protect him.
When Wei Yang’s spasms strike without warning, he may slam his feet against the floor or bite his fingers so hard that his parents struggle to free them without causing further injury. Sometimes, both must step in to restrain him.
For Kong and his wife, Wong Yin Teng, caring for their son means staying alert to danger throughout the day and night.
Wei Yang has Lesch-Nyhan syndrome, a rare genetic disorder that causes neurological impairment, involuntary muscle movements and compulsive self-injury.
Now, his biting has become harder to control despite medication. His parents hope he can finally undergo a procedure doctors have recommended for years, but they cannot afford it.
An appeal featured by FMT in July raised about RM40,000 before donations slowed. The family now needs between RM280,000 and RM300,000 for deep brain stimulation (DBS), a procedure intended to help control his symptoms.
The money collected remains with Suriana Welfare Society Malaysia, which is helping the family raise the funds.
A long search for answers
Wei Yang’s parents first became concerned when he was about a year old. He could neither sit up nor roll over as expected, but doctors could not explain why.
With financial help from a relative, the family travelled to Australia and Singapore for further tests. They returned without answers.
At six, Wei Yang began biting his fingers and lips. Doctors at Universiti Malaya Medical Centre suspected a rare disease and ordered genetic testing. The diagnosis finally came when he was about eight.
His parents had spent years searching for an explanation and trying different treatments in the hope of helping him.
Today, the second of three brothers cannot stand or walk independently. He needs help with daily routines and constant supervision because he may injure himself without warning.
His parents have adapted their home and daily lives around his needs. But as his symptoms worsen, keeping him safe has become more physically demanding.
When medication is no longer enough
Wei Yang’s self-biting has become more frequent and forceful, sometimes requiring medical treatment.
Doctors have increased his medication to the maximum dosage, yet it has failed to control the urges.
The drugs also leave him drowsy, adding to the burden of his care.
When severe spasms strike, one parent may not be enough to hold him safely. Both must intervene. They also watch over him at night, knowing an episode can leave him crying and exhausted.
Doctors have recommended DBS, which involves implanting electrodes to help regulate abnormal brain activity. The family was told about the procedure years ago but could not afford it.
With the self-injury worsening despite medication, doctors now believe it should be pursued as soon as possible.
Further delay could leave Wei Yang at greater risk of injury, while higher medication doses could cause more drowsiness, according to the medical advice provided to the family.
An urgent brain MRI and the operation can be scheduled once the necessary funds are available.
The estimated cost has risen from RM250,000 to between RM280,000 and RM300,000, including additional needs such as medication and a special wheelchair.
With RM40,000 collected, the family faces a shortfall of RM240,000 to RM260,000, depending on the final cost.
The boy beyond the illness
Despite the demands of his condition, Wei Yang has his own interests and ways of connecting with those around him.
He recognises familiar voices, operates his iPad himself and enjoys watching television. He also plays with toys that help strengthen his hand muscles. When someone offers him a hand, he takes it.
His mother recalls that when she cries, he asks if she is upset because of him. He also tells her he will try not to hurt himself.
For a mother, those words are especially painful. Her son wants to reassure her, yet the involuntary urges are beyond his control.
Both parents are getting older, and the physical demands of caring for him are becoming harder to manage. They also worry about who will look after him when they can no longer do so.
For now, their focus is on securing the treatment doctors believe could help.
The adapted chair remains a daily reminder of how far a father has gone to protect his son. But his ingenuity and the parents’ constant vigilance cannot replace the medical help Wei Yang needs.
They are appealing to Malaysians to help them raise the remaining funds.
Donations can be made to Suriana Welfare Society Malaysia, RHB account 262 689 0000 2614, using the reference 'KWY26'.
For more information, contact Rachel Ho at 012-211 4444 or Ivan Lee at 012-333 0022.