Amelia was actually born healthy. She had the ability to babble, to sit up and stand. However, she was not an easy baby to take care of.

She would always be crying constantly, and my parents couldn’t figure out why. 

She was only about two years old when signs started to show. She started crawling backwards and became floppy, and eventually she could no longer sit on her own anymore.

That was when we realised that Amelia was not going to be the same anymore because she was losing the milestones that she had as a toddler.

Because of how rare the condition is, it was very hard to get a genetic diagnosis for it.

My mum actually did a few tests – genetic research and diagnostics – when Amelia was younger, but there was no answer to her condition.

After many years of trial and error, Amelia was finally diagnosed with Infantile Neuroaxonal Dystrophy (INAD) shortly before her 15th birthday in 2021. 

Many children with INAD do not live past 10 years old.

Most of them would lose all their abilities, their own breathing and they would eventually go. We would say that there’s nothing much science can do for Amelia’s condition.

Even if there is a cure, Amelia can never gain back what she has lost. 

Amelia’s condition deteriorated gradually over the years.

She started having seizures at the age of five. At the age of six, she was diagnosed with sleep apnea which means that she would forget to breathe through the night.

When she was 12, she lost the ability to breathe on her own completely.

Since then, she has been relying on the ventilator to live. 

INAD stole every ability from Amelia.

Simple things like opening her eyes and swallowing her own saliva are a challenge to her.

Sometimes she would choke on her saliva; her difficulty in swallowing meant we had to use a machine to help suck fluids out.

At home, there were also a lot of life-and-death scenarios.

These occurrences increased when she was between the age of 10-12, the most critical period for kids with INAD as many of them tend to pass away at this age. 

Amelia was always in and out of the hospital with pneumonia or lung collapse.

There were multiple incidents when we thought we almost lost her: her oxygen levels would drop within split seconds from 90% to 70%, 70% to 50%.

When it happened, we had to use a resuscitation bag to bag her. There were times when, no matter how hard I tried, I could not see the colour return to her pink rosy cheeks.

Instead, she was getting blacker and more pale. In those times, I really thought that she was gone.

But by God’s grace, as I continued bagging her in those moments, the numbers would eventually start to pick up.

Honestly, no matter how well I can bag – I could never get Amelia back.

It can only be God. God has brought Amelia back into this world again and again.

By God’s grace and His hands upon our family, He has preserved Amelia’s life.

We could tell that Amelia’s condition is degenerating; if not for Him, it would have been impossible for Amelia to live until 16 years old.

Amelia is the best example of living a quiet life and she has taught us how to be patient with others.

Oftentimes, we spend a lot of time guessing what Amelia wants to say to us.

Each time, she would wait patiently for us to understand her, even if it takes 10-15 minutes of us guessing.

It’s as though she is saying: “Whatever I want to tell you is important. Even if it takes time for you to guess what I want to say, I’m going to wait until you understand me.”

Amelia has also been a blessing to my close friends – they’ve been inspired by how she lives her life so prayerfully.

Despite her limitations, Amelia is constantly praying and has this deep connection with God because of her quiet spirit.

I have asked Amelia: “Have you seen Jesus on your own?” She swallowed to say yes.

The amount of times she was in a life-and-death situation, her body all blue and black as we tried resuscitating her – these are all moments when you know that God is in control of her life.

I know Amelia’s condition grows more critical as time goes by.

I know that she will not be able to live as long as me, and that we will never see her walk down the aisle on her wedding day.

I know we won’t be able to fulfil the dreams that normal siblings have. 

But with the remaining time left, I hope that we can make more memories together.

It doesn’t have to be big, huge things… but just simple things that we often take for granted like cuddling her and kissing her.

I know that there’ll be a day when I will not even be able to kiss her anymore and hold her physical body so I’d just like to spend more time with her.

If Amelia had a voice, I think she would tell everyone that no matter how small or different you think you are compared to the rest of your friends and people around you, there is no perfect human being and God has made and created each one of you uniquely.

I think Amelia would want everyone to know that you are made by God and you are loved by God.

Amelia’s life is not a mistake.

She is here to show us that no matter how little ability she has, she can still glorify God’s name. 

My sister’s 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.”

I think Amelia would want everyone to know that you are made by God and you are loved by God.

Amelia, I want you to know that jie jie has been very blessed to have you in my life.

When things get tough, tiring for you and when the day comes – know that you are very loved by all of us.

Even though your earthly body might leave this world, you will never be forgotten.