Never give up
Cordelia Lee is an advocate for rare diseases and organ donation, prompted by her son Patrick’s diagnosed with biliary atresia and later with Allagille syndrome. Cordelia relies on her creativity, voice and wellness methods to assist communities across her homeland of Malaysia. She is a motivational speaker and a singer-songwriter using both to raise meaningful awareness
Written by Cordelia Lee, rare mum to Patrick
My heart was filled with delight, dreams and hopes when my baby was born. It was an unimaginable feeling. My baby brought me not only into a world of breastfeeding, diapers and sleepless nights. Within two months of his birth, I was introduced to an unheard medical condition with constant monitoring of my baby’s medical symptoms. I was overwhelmed, afraid, feeling lost and perplexed. I got lost into medical jargon with exhaustion as my constant companion.
It was after a Kasai surgery, that the surgeon confirmed my baby to have biliary atresia. My baby had constant jaundice that never appeared after birth. The doctor suggested to do a minor surgery to check on his liver. If the surgery detected possibilities it could be biliary atresia, they would continue the surgery and undertake a Kasai procedure.
For the first time I witnessed my two months old baby’s eyes full of fear, confusion and pain. I chose to find solace in a mindfulness method and prayers as an outlet to manage my mental-emotional wellbeing. However, each time I see my baby, my sadness almost automatically came. A visit by my husband’s friend made me realised the possibilities of my baby’s young death. “I have seen many, many babies who died.” Her words broke my heart with the realisation I could lose my baby to this disease.
Immediately after she left, I fell into depression. I wept daily, feeling torn and hopeless. However, I tried not to allow my baby to see that. After feeling even more drained and exhausted for a month, I decided I need to do something beyond this reaction. I shall not deny my sadness nor grief. However, this was depleting me mentally, emotionally and physically. I couldn’t help but imagine the worst outcomes for my baby’s unknown future.
In January 2018, I told myself I need to find a way, not to continue my downward spiral. That was when I asked myself; what was my greatest fear? Immediately my answer came–my baby’s death. All at once, I was angry, unhappy and fearful. Why did my baby need to suffer? Although my angry breaths were rising, mentally I told myself—slow down your breaths.
When I regulated my heighten physical state with slower breathing, I reflected on the possibility of my baby’s death. Suddenly something shifted in my mind. If my baby was meant to have a short life, I cannot accept his last memories would be pain, suffering, doctors, and hospitals. What kind of a life was that? I want his life, his memories to be of smiles, laughter, knowing he is loved by his parents, having a meaningful and purposeful life. I almost said these words aloud, “I want to empower my baby!”
Within seconds, I had doubts. How could I empower a three months old baby? How could he understand me? I could feel the darker thoughts creeping into my mind once more, my body becoming heavier by the second.
I told myself, I must try no matter what. Although I did not know how to do it because I did not have the experience. I would rely on logic on how to do this. I noticed babies observed our body language. So, I started teaching my baby, Patrick, thumbs up and fist raised in the air as a sign of a fighting spirit against the odds. I would tell Patrick often, “Mummy and daddy cannot promise you there will be no pain later on. However, I promise you, we will be with you all the way. So long you don’t give up on yourself, we will support you with all we can.”
From teaching using body language, to pep talks which expanded to reading aloud children’s books on love and on staying strong in facing difficulties in life. I also decided to rely on my creativity; I wrote and sang songs on loving himself, loving life (I love life song) and to have a fighting spirit to challenges (Never Give Up song.). My singing was for myself as well, to motivate myself to keep on going no matter the odds.
For the next 16 months, it was a ride of sudden turns, twists and calmness. He would have occasional bleeding stools, daily itching (pruritus), failure to thrive with a swollen liver and spleen.
Based upon Patrick’s doctor’s advice, Patrick did the genetic test, which confirmed in March 2019 that he have an even rarer disease known as Alagille syndrome.
During this period of time, I got to meet especially mothers in hospital wards, eatery places, shopping malls who decided to encourage me by loving words, prayers and wishes. Each time I felt uplifted to keep on going.
Along the way, a couple of mothers encouraged me to bring my songs to a bigger platform. They believed that I can help more people instead of limiting this to a smaller community. I admitted I tried to brush it off because I felt being a singer means you need natural talent . I do not have the interest to perform on stage. However, as each mother kept urging me to think further than what I am doing now, I started to think, ‘yes, why not take the next step?’
Interestingly, once I made up my mind to take the next step, my friend wanted to introduce a music director to me. Under his training for two years, I improved in my singing and sharpen my songwriting craft. There were times during the recording, I felt overwhelmed because I felt this was out of my league. I decided to be honest with my thoughts.
My music director responded with, “Breathe. Remember to breathe, Cordelia. Remember your mission. Why you are doing this.”
After I felt calmer, I returned to the microphone once more. If the EP (extended play album) response was not positive, at least I have tried. To my surprise, I received positive feedback from friends and strangers.
I would continue singing Never Give Up to the mothers in the wards and during community events. As Patrick grows up, he now feels inspired to do the same. He’s started singing more, inspiring more families to stay united, stay strong despite the growing challenges. By sharing the activities of my son on social media, we have encouraged families with special needs children to have hope and courage to continue persevering and fight for their children for a better tomorrow.
As Patrick grows he is becoming more active, healthier, mischievous and living a meaningful life. He believes in the words of Never Give Up, and tries to apply for himself and for others as well. He’s an advocate by highlighting his flag which contained the words, “Rare Disease Awareness”, “ Liver Transplant Survivor”, “Neurodivergent” and “Alagille Syndrome.” Patrick chose an eagle runner to represent him.
Since Patrick had his liver transplant in July 2019 at the age of 1 year and 9 months old, Patrick developed a passion for running. He has collected 76 finisher running medals since August 2025.
Patrick developed empathy and compassion to children in the hospitals. He decided since two years old to make them happier by giving them my handmade sock dolls as gifts.
In 2025, Patrick had won 3rd prize in a public speaking competition and 1st consolation prize for singing Little Fighters composed by me for a kids’ talent competition. My family has been invited to give a talk on organ donation at a school. On 22nd March 2025, my husband and Patrick gave their first motivational talk on organ donation for a school of teenagers. On 17th August 2025, Patrick won 2nd place award in the Gift of Life organ donation video competition under age of 6 to 12 years old.
One day, I aspire to get my manuscript, Little Fighter, Warrior Parents, accepted and published. Because I want to demonstrate that having limited conditions at birth does not have to mean that our children’s lives must also be limited. They have the freedom to live as they like. Our role as parents is to inspire and motivate children to aim high by providing them with love, faith, and hope. Until we decide otherwise, nothing is ever impossible.
