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I married in 2016 and gave birth to my son, Patrick in 2017.
As strong as we are as a family, we couldn’t change the fact that Patrick has Alagille syndrome. This genetic condition eventually led to his liver being in a state similar to end-stage liver disease.
We had to endure multiple hospital visits, tests and decisions along with the waves of emotions that attack one’s very soul from every direction. A liver transplant was successfully done on 2 July 2019, without which he was unlikely to live past his second birthday in October.
Living through the disease since his diagnosis and the transplant was an emotional journey for us and still is today. We could not escape the thought of the possibility of losing Patrick at a young age. But the transplant gave us a new beginning.
Patrick is going to be 6 years old. He is an active, joyful, giving, talkative, mischievous boy with his own mission of giving back all the love, support, encouragement and prayers he has received until today. He loves making children in the hospital ward happy by giving them sock dolls (which I make). He has been doing this since after his liver transplant in 2019.
Patrick loves to explore his creative side in singing, dancing and drawing. Patrick loves singing “Never Give Up” to mothers and kids at the Ronald McDonald House Charities, among others. I wrote part of this song for Patrick when he was 3 months old.
He is also into 5km fun runs, which he started in 2023! He also started Batik painting this year and we go about giving Batik art pieces at Universiti Malaya Medical Centre/PPUM, as an encouragement to cancer patients there.
This journey with liver disease like Alagille changed our lives forever as a family and impacted others who followed our journey on Facebook and in my blog https://ehomemakers.net/ehome/unexpected-living/.
Through the experience with Patrick, we learned to be grateful and to have empathy as well as acceptance of the things we cannot change. Life and sickness are to be endured with perseverance, resilience, hope, faith and most importantly, love.
When life tests you beyond your breaking point, just remember that new beginnings can also be found, so long that you don’t give up and keep moving forward.- Humans of Kuala Lumpur
