Parents of sick boy pray for a miracle

HIS name is Edison — a peppy, very inquisitive and bright boy.

At times, he might be a little naughty just like any three-year-old. But he always had a smile on his face, occasionally breaking into an impish laugh while having fun playing pranks on his elder sister or with his toys.

He could already eat — even bathe — by himself.  In fact, he could do most everything on his own.

Not picky over food, he liked almost everything his mother cooked but what he loved most was mum’s fish-head dish and KFC fried chicken. He also loved playing around his parents but is most attached to his mother.

Then one day, all the laughter fell silent. It happened some five months ago — like a bad dream. Everything changed. Now, the cheerful child and his funny innocent antics are but memories of the happy times the family shared together before life dealt them a terrible hand.

Little Edison has gone from bubbly and energic to sickly and bedridden and all he can do now is lie in bed — and wait (literally) for attacks of seizure to happen and torment his little body.

He can no longer talk or eat by himself and doesn’t seem fully aware of his surrounding.

“I don’t think he even knows who I am now,” said his 33-year-old mum, Laytjakha Viony Bun, a housewife.

His father George Minchong works as an assistant cook, earning around RM1,000 a month.

His sister Angeline is five years old. She has to stop attending class because there isn’t enough money to send her to school.

With a blank look in her eyes, Laytjakha said the world felt ‘unreal’ to her now.

Everyday she wakes up, hoping it’s all just a bad dream that will go away. But each new dawn brings the harsh reality that she may have to continue living in infinite grief.

She wonders why birds still go on singing and flowers still go on blooming.

“Don’t they know I’m in great sorrow,” she asked in anguish.

Fever-induced brain damage

Edison is suffering from brain damage following high fever and has become epileptic after that.

He was kept in intensive care at the Sarawak General Hospital (SGH) for 99 days before being transferred to the normal ward and was discharged after more than 100 days in hospital.

He has no control over his body movements due to frequent seizures and has to be fed with a special kind of milk — RCF milk — to control his fits.

The milk has to be ordered from the US, taking three to four weeks for each order to arrive. Hope Place Kuching, a charitable organsation, is provding the milk to Edison who needs two cans a day.

Hope Place founder Kelvin Wan said according to the doctor, Edison is the first local patient needing RCF milk.

Besides the milk, the youngster also needs 10 suction tubes each day and a change of Aquacel Foam dressing every four days.

According Latjakha, her son’s condition began with an ordinary fever. Like most people would do in the same situation, she gave him some Panadol. But for the next three days, his temperature did not subside. Moreover, he started to complain about abdominal pain.

On May 19 night, Edison went to sleep earlier than usual. He looked very tired.

When Latjakha woke her son up around seven o’clock the next morning, she noticed he looked rather listless. She lay him down on the sofa to let him rest while she went about the household chores.

Later, while checking on her son, Latjakha noticed there was something not right about his eyes. They were rolled upwards and he seemed unable to look at her objectively when she called his name.

This lasted for several minutes. Gripped by panic, Latjakha carried her son to a neighbour’s house, seeking help. The neighbour suspected the little boy could have had a fit although his body was not stiff. By that time, Edison was already in a semi-conscious state.

Laytjakha tried to wake her son up but he remained unresponsive. Realising it was an emergency, she called her husband but he had gone out, taking their daughter to school.

While waiting for her husband to return, Laytjakha pinched Edison’s hand to see whether he would respond. He did say something in a very weak voice to indicate that the pinching hurt. Not knowing what else to do, Laytjakha resorted to breastfeeding her son. Edison seemed to respond quite well to this.

As soon as her husband reached home, they rushed their little boy to Rajah Charles Brooke Memorial (RCBM) Hospital. There, around 9.30am, Edison got into another fit, lasting about 10 minutes. Two more convulsions followed — at 10.30am and 11.30am. Edison was unconscious in between.

Placed in ICU

During this time, the doctors and nurses did everything they could. Eventually, they decided to admit Edison into intensive care at SGH.

“I know everything possible has been done to save my baby,” Laytjakha said.

“They have done all sorts of tests, including blood test and brain scan to find out the cause. They also checked whether he had JE. But all the tests turned out negative.”

Laytjakha said she and her husband, George, could only look on helplessly as their child continued to languish in a ‘state of oblivion’.

Edison was kept in ICU for 99 days before being transferred to the normal ward. Most of the time, he was unconscious with seizures coming on and off.

“It’s not easy for me to see him getting those fits. When they strike, he looks like he is being electrocuted,” Laytjakha said between sobs.

The hospital kept Edison in the normal ward for nine days before allowing him to go home.

Laytjakha said she was totally distraught when told her son might never recover to be like the boy she knew. She was even told to prepare for all eventualities — that he might ‘go’ anytime.

At this point, Laytjakha was sobbing so unrestrainable that she couldn’t talk to anyone and had to give herself time to regain her composure.

As soon as she had collected herself, she said she kept thinking back to the time she was pregnant with Edison — what joy it was to feel his first kick against her womb and later to deliver him into the world and hear his first cry. It was even a greater joy nurturing and watching him grow.

Now suddenly, he has become like this. Who would have expected it to happen?

That’s why Laytjakha still finds it very hard to accept the reality of her situation. She said it was most difficult to accept such a very serious condition could have started from a seemingly common fever.

Getting a little better

Edison did seem to have gotten a little better after being discharged. After the frequency of his seizures has decreased, he is able to sleep more restfully.

During his stay in hospital, there were times his persistent seizures would cause him to lose vital sleep and he had to be sedated to get the rest he sorely needed.

One time during the first month of being warded, he nearly bit off his own tongue during a seizure. The doctor had to stitch back the tear and let him use a teeth-gummer to prevent further biting. Sometimes, he also bit his lips when the paroxysms happened.

Laytjakha said she was worried Edison’s seizures might recur. Nearly half a year has gone by and so far, there is no significant change in his condition.

Laytjakha said while Edison could now respond to noise, she did not think he could actually recognise her even though sometimes he appeared to be conscious.

But she refuses to give up hope and is still praying for a miracle.

“I’m waiting for him to get up, walk and run like before,” she said.

“Never mind if he cannot talk. It’s enough for him just to be with us. I’ll be happy if he can join us for dinner just like before. It’s okay that my husband and I are poor. To see him smile again is enough to make us feel rich.

“I want to see him play with his toys, tease his sister, eat his favourite food. I want to hear him call me mummy again. I want to see him grow up and have a family of his own.”

She said George (her husband) is equally devastated.

“He, too, feels he would not want any other thing in life except to have his son back to his usual self. Even though we’re poor, our life would be complete with a happy Edison running around, doing his playful little things again. But now life is empty. And we are waiting for him to fill up our life again.”

Both parents have spent many nights taking turns to keep vigil over their child for fear he might bite his tongue or lips should a seizure strike.

Laytjakha and George now regret deeply for missing out on fulfilling Edison’s wish to have KFC fried chicken.

The little boy had asked for the treat around the middle of the month before he got the fever and his mother had asked him to wait till the end of the month for ‘daddy to get his pay first’.

Edison did not throw any tantrums. Then a few days later, he was stricken with the fever.

Laytjakha has expressed her appreciation to the Welfare Department for contributing an oxygen machine for her son’s use. Edison continuously needs extra oxygen.