Our daughter Ginny is five months old.

She smiles when she sees familiar faces and recognises the voices of the people who love her.
She watches the world with bright curiosity.

Her mind is ready to discover life.

But while her mind is growing, her tiny body is slowly losing the ability to move.

Ginny has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of SMA. Without treatment, many babies with SMA Type 1 do not live beyond two years old.

When Something Didn’t Feel Right

When Ginny was around 2–3 months old, we noticed something unusual.

She was alert and responsive like any baby. But her body wasn’t moving the same way.

Her legs barely moved. She could not lift or turn her head.

At first, we hoped she was simply developing a little slower.

But the feeling that something was wrong never went away.

The ICU Stay

At 3–4 months old, Ginny developed pneumonia and was admitted to the ICU.

Watching such a tiny baby struggle to breathe is something no parent is prepared for.

After she came home, we noticed something heartbreaking. She had lost even more muscle strength.

When unsupported, she flops wherever she is placed. She still cannot lift her head.

She also struggles to clear phlegm from her lungs, leaving her chest heavily congested. Even drinking milk became difficult because she cannot cough effectively.

We raised our concerns again and again. But answers did not come quickly.

The Diagnosis

At five months old, doctors suspected something more serious. A DNA genetic test confirmed the diagnosis.

Our daughter Ginny has Spinal Muscular Atrophy (SMA) Type 1.

What SMA Does

SMA destroys the motor neurons that control muscle movement. As these neurons die, muscles grow weaker. Babies gradually lose the ability to:

1. move their arms and legs
2. hold up their heads
3. swallow milk
4. clear their lungs
5. breathe on their own

Without treatment, most babies with SMA Type 1 do not live beyond two years old.

Time Is Critical

Every day that passes means more motor neurons are permanently lost. Once they are gone, they cannot come back. Ginny’s diagnosis came only at five months old. Precious time has already been lost.

The Treatment That Could Save Her

There is hope.

A gene therapy treatment exists, and children who receive this treatment early have been able to sit, crawl, walk and breathe independently.

More than hope, it has given families something they feared they might never have again: a future.

In Singapore, this treatment costs approximately SGD 2.4 million. It is not covered by insurance or government subsidies.

As Ginny’s parents, a young couple who had only just begun building our lives together, this amount is impossible to manage alone.

A Family Facing the Unimaginable

Like any new parents, we dreamed about watching our child grow.

First smiles. First steps. First words.

We never imagined we would be racing against time to save our baby’s life.

When the diagnosis came, we felt grief, disbelief and helplessness. What remains now is hope.

Hope that people will hear Ginny’s story.
Hope that together we can give her the chance to live.

Ginny Today

Ginny is a bright and curious baby.

She watches the world around her.
She recognises familiar voices.
She smiles when we speak to her.

Her mind is ready to explore life. Her body just needs the chance to keep up.

How You Can Help

We need to raise SGD 2,397,300 for Ginny’s treatment.

If 240,000 people each give $10, Ginny can receive treatment.
If 24,000 people donate $100, we can save her life.

Every contribution brings Ginny one step closer to the treatment she urgently needs.

Even $1 matters.

If you are not in the position to donate, please help us share Ginny’s story. You are helping give our little girl the chance to live. 

You can also follow Ginny’s story on Instagram @hopeforbabyginny for updates.

We hope that Baby Ginny can get the treatment that she needs. We also know that it’s a large sum and, in the unfortunate that the funds raised are insufficient for Zolgensma, Ray of Hope will ensure that the funds will go towards other medical expenses and physiotherapy.

*The campaign goal includes a 1.8% payment processing fee.