At three years old, our princess (Miss A) was full of energy, curiosity, and the little joys that made our home feel complete. Her days were busy with attending Schools as Community Centres (SaCC) programs, playing with mud, swinging in the park, running in circles, and random painting.

Suddenly she developed an intense fever for a couple of days, then limping while walking. She was showing symptoms of a flare, leading to admission to hospital with high inflammatory markers. Her Doctors decided to go for an immediate washout, under surgery.

During this time, mum was in her final month of pregnancy with baby number 2 and spending countless sleepless nights with Miss A in the hospital. On her surgery day, mum was waiting outside theatre with fear and lots of tears, while every second felt like a lifetime more.

Little did we know this was just the beginning. The fever comes and goes, which means our little princess had to have multiple admissions to the hospital without a clue as to what was going on behind the scenes.

While living through this, mum ended up delivering a baby boy while Miss A was still admitted in another ward. Our newborn, Master A, was transferred to NICU on his fourth day with a high fever. After a week, he was discharged and made his way home.

Four months later, our world changed in a way we never imagined. Both of our children were diagnosed with a rare inflammatory disease called Mevalonate Kinase Deficiency (MKD).

Before the diagnosis, we had never heard of MKD. We were suddenly confronted with medical terms, hospital visits, specialists, medications, and questions we never thought we would have to ask as parents.

Most frightening of all was knowing that something invisible inside our children was causing them pain and illness.

Our days have become a cycle of monitoring symptoms, managing appointments, and giving daily injections. Every injection is difficult; not only because of the physical pain, but because of the emotional pain that comes with holding our child while they cry. As parents, there is an instinct to protect our children from everything that hurts them. Yet here we are, sometimes having to be the ones who cause a moment of pain in order to help protect them from something much bigger.

Miss A has a developmental delay due to this disease, and administering an injection every day is a nightmare with her. She cries a lot, sometimes just tries to grab the injection, and gets a needle injury.  We try to make her calm with her toys, while hiding the tears and fear in our own hearts.

Master A is only six months old. He cannot understand why we hold him still or why he has to endure another injection. He simply cries, and we hold him close afterward, wishing we could take the pain away.

There are moments when the emotional weight feels overwhelming. We worry about their future. We worry about the next flare, the next illness, and whether we are doing enough. Ordinary family routines have been replaced by medication schedules and medical concerns.

But alongside the fear, there is an incredible strength. We have learned to celebrate the smallest victories: a day without severe symptoms, our baby reaching for us with his tiny hands. 

These moments remind us that our children are more than their disease. They are not their diagnosis. They are two beautiful little people who love, laugh, explore, and bring meaning to our lives.

We never imagined that parenthood would include needles, medical appointments, and so much uncertainty. But we also never knew how strong a parent's love could become when faced with something so frightening.

Every day, we choose courage, not because we are fearless, but because our children need us to keep going.

We hope that one day they will look back and know that every difficult moment, every injection, every sleepless night, and every tear came from a place of love. We could not take their disease away, but we could hold their hands through it.

And so, one day at a time, one injection at a time, we keep going, for our daughter, for our son, and for the hope of a healthier tomorrow.

We are grateful to our kids' doctors, nurses, researchers, and ANZFAID who are working in the background.