PATRICK KON (pix) is just like any four-year-old. He is talkative, loves to sing and play with his toy cars.
But the little boy has been fighting a battle few adults, much less children his age, have ever had to face.
He was born with a rare genetic condition that rendered his liver unable to function at peak level.
But it did not stop there. Just before he turned one, an echo-cardiogram confirmed he also had a heart condition known as pulmonary stenosis, a constriction of the artery that takes blood from the heart to the lungs.
A liver transplant has since given him a new lease of life while his heart is on the mend, but challenges for the toddler still remain.
However, Patrick has developed allergies to various types of food, making it a challenge for his father Kon Ket Sing, who prepares the meals.
His mother Cordelia Lee said she noticed something amiss when Patrick was only one-and-a-half-months old.
“His stools were pale and his jaundice didn’t subside even after he turned a month old,” she told theSun.
On the advice of a family member, she took Patrick for an ultrasound and a blood test. The results were not good.
“The doctors told us that Patrick could have an infant liver disease, but the only way to confirm it was to conduct a minor surgery to check the liver and bile ducts,” Lee said.
“They proceeded with surgery to remove his gallbladder. Regular blood tests then had to be conducted to determine if the (procedure) was successful,” she said.
However, when his condition did not improve at six months old, the doctors thought that Patrick might have Alagille Syndrome, a genetic condition that leads to liver failure.
Further tests confirmed the doctors’ suspicion and the parents were advised that a liver transplant was essential. But Patrick still had to gain more weight.
“He had to weigh 8kg to 10kg to be safe for surgery but at the time, he was only 5.17kg,” Lee said. “It was a matter of time before his liver failed.”
The next few months were filled with anxiety and dread as Lee and Kon went back and forth from the hospital with Patrick.
“We were afraid that he would not live to celebrate his second birthday,” Lee said.
Finally, there was some good news. Kon turned out to be a match and the family was advised to have the surgery done in China, where the required facilities and expertise were available.
Through the help of a non-governmental organisation and a video that went viral, a total of RM140,000 was raised to cover the cost of the surgery for both father and son, and accommodation in Shanghai.
Patrick was a year and nine months old when he received a part of his father’s liver.
The child has recovered remarkably well, but the battle was far from over.
For Patrick, it would mean a lifetime of health management that includes monitoring the food he eats.
Kon said the immuno-suppressants that Patrick has to take for the rest of his life has caused him to develop allergies to various types of food.
“He can’t eat most varieties of fish, peanuts, red beans and prawns, among others. Some were his favourite but he is now allergic to them,” he said.
“We are very careful whenever we introduce new foods to him, especially those high in protein,” he added.
A recent check-up also brought more good news. His heart condition is improving, which is a relief for the family.
Lee said a book on their journey was already being drafted to create awareness for other parents facing similar challenges.
Patrick, who is unaware of the magnitude of his challenges, meanwhile putters around in the kitchen and helps his mother bake his favourite snack, muffins.
