With the knowledge that time with her sister is limited, AMANDA NG determined to make every moment count. She shares the joys, heartaches, and rewards of leaving school to care for her sister.
When my sister was born, I was prepared to be a good older sister. I planned to protect my baby sister from bullies and anyone that would hurt her. But what I didn’t know was that I couldn’t protect Amelia from the realities of life. While other siblings are journeying together through their school life, dating life, work life, or eventually marriage life, Amelia and I are journeying towards making memories before death knocks on her door.
Amelia was a smart toddler growing up and I loved her company. However, when she was around 14 months old, my mum started noticing that Amelia was crying and hitting her head with her hands a lot. She brought Amelia to the doctors but no one was able to explain what was wrong. After a few more months, my mum realised that Amelia was struggling to crawl. From that year on, we saw a rapid decline in her condition. She was losing all her physical abilities. By the time she turned two, she was unable to crawl, sit, or babble. When she was five, Amelia started having seizures that were so severe that she needed the strongest epilepsy drug available. My younger sister that was once able to sit and call me jiejie (Mandarin for older sister) is now bed-bound, tube-fed, and requiring round-the-clock care.
A STEP OF FAITH
There was a time when Amelia was frequently admitted to the hospital, and every few months, we had to visit her in the high dependency ward or the Intensive Care Unit (ICU). As a family, we have had to learn how to remove her phlegm via suction so that it doesn’t obstruct her airways. There are also moments when Amelia’s oxygen rate can drop, causing her to turn pale and blue due to the lack of oxygen to her brain, which is life-threatening. We have had to resuscitate Amelia with medical equipment to force air into her lungs to help her breathe again.
One day when I was 13 years old, when my dad and I arrived home after he had picked me up from school, we heard screams. Inside the house, I saw my 10-year-old sister looking lifeless and turning a pale blue. Miraculously, my dad succeeded in getting her breathing again. That night while Amelia was in the hospital, I couldn’t sleep. I wondered, if I had lost Amelia today, did I made enough memories with her?
I WONDERED, IF I HAD LOST AMELIA TODAY, HAD I MADE ENOUGH MEMORIES WITH HER?
Towards the end of the 2017, God dropped the idea of home-schooling into my heart. It was something I had never considered, but it was the only way I could spend more time with my younger sister. When I approached my parents about it, their answer was a firm NO! However, a few weeks later, God showed my mum that home-schooling isn’t just about my education. It was giving me an opportunity to explore my life the way God wanted. We prayed as a family and felt peace to go ahead with the school withdrawal after my Secondary 2 year-end exams.
GLORIFYING GOD’S NAME
Through my four years of home-schooling, Amelia and I have become best friends. As Amelia is non-verbal, communication looks different for us. It requires patience from both parties, and can sometimes feel like a guessing game. Amelia was often frustrated when we couldn’t understand her, so my mum taught her to blink or swallow her saliva if she wants to say yes, and to ignore us when she wants to say no. In 2018, we started Amelia on an eye-gazing device in the hope that it would help her communicate with us. With the help of a therapist and the eye-gazing community, she was able to use icons to communicate her thoughts and views. She was able to play games with her eyes, draw, and finally tell us what she likes and dislikes. The machine gave Amelia her voice back!
After I started home-schooling, I took up the role of helping to resuscitate Amelia. I can barely keep track of the number of times I have had to do it. Our home has become like a mini ICU, with Amelia hooked up to oxygen tanks and various machines to keep her alive. One night in June 2020, Amelia was admitted into ICU. Her condition had become so critical that the doctors didn’t know if she was going to make it through the night. Her heart rate, blood pressure, and temperature were lower than usual. During that season, many came forward to share these verses with us:
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” (Psalm 139:13–14)
The verses reminded us as a family that Amelia was created wonderfully and made specially by God. Amelia is not a mistake and she is here to glorify God’s name. When we brought Amelia home, the doctors told us that she was going to die soon. The fact that she made it through that night was already a miracle. The fact that she is alive today is a wonder. To this day, no one knows how her body is coping with a very low temperature of 32–34 degrees and a low heart rate when she is asleep.
WALKING IN SURRENDER
Time and time again, God has shown us that despite her physical challenges, He created Amelia perfectly in every way. Death is not a taboo subject in our family. Amelia has experienced countless near-death experiences, and each time she comes back to us, she confirms that she has seen Jesus, and I believe she truly has. Whenever we ask her if she knows what heaven is, and whether she believes that God has His plan for her and His plan isn’t finished, she swallows to tell us “yes”. Despite all the trials in her life, Amelia is now a teenager with so much strength and will to live. Even so, I strongly believe that it is only by God’s love and His grace upon my family that she has lived this long.
HE IS IN CONTROL OF AMELIA’S LIFE AND HER JOURNEY WITH US.
Just a week before Amelia’s 15th birthday last year, she was finally given a diagnosis for her condition — Infantile Neuroaxonal Dystrophy (INAD). This rare condition with no cure affects only 150 kids living worldwide. Amelia is the first case in Singapore. Children with INAD eventually lose their physical and mental skills, and most pass on before the age of 10. That stunned us. Statistically, Amelia was supposed to have died five years ago! It was like God telling us once again that He is in control of Amelia’s life and her journey with us.
Our family has made the difficult decision to not bring Amelia back to the hospital if her condition becomes critical again, because Amelia wants to receive palliative care at home and leave this world with everyone she loves and everyone who loves her by her side. It’s the toughest decision we have made but we know that as the time draws nearer, God has been preparing us gently as a family.
INAD has stolen everything from Amelia — from the ability to stand, crawl, and cry when she was a child, to the ability to breathe, eat, and move on her own now. But one thing that INAD will never steal is her fighting spirit. We don’t know if Amelia will make it to her 16th birthday this year, but I know that she is a warrior, a fighter, and a light to many others.
Her life is a miracle that medical science says is impossible. But just as Jesus says in Matthew 19:26, “With man this is impossible, but with God all things are possible.”
