Blakeview, Adelaide, Australia
Save Our Daughter Arzoi
She Needs $3M for Urgent SMA Treatment
Our daughter Arzoi born in January, 2025 has been diagnosed with Spinal Muscular Atrophy (SMA) Type weeks after she was born. It’s a cruel genetic disease that weakens her muscles, steals her ability to move, eat, and eventually breathe. The treatment is Zolgensma which costs $3 million AUD. Arzoi is too little to fight this battle alone. But together, we can give her the future she deserves.
Every second counts. Save Arzoi’s life today.
Our hearts are broken. We are reaching out to kind souls like you for help.
On January 19, 2025, our beautiful baby girl Arzoi came into this world, bringing us endless love and joy. But just days later, our happiness turned to devastation. Arzoi is diagnosed with Spinal Muscular Atrophy (SMA) Type 1—a cruel genetic disease that weakens her muscles, steals her ability to move, eat, and eventually breathe.
Without treatment, SMA is fatal. Most babies with SMA Type 1 do not live past their second birthday. Watching our daughter slowly lose the ability to move, swallow, and breathe on her own is an unbearable thought—but we have a chance to change her fate.
Please donate, share, and be a part of Arzoi's miracle.
Zolgensma - the chance to save Arzoi
There is a ground-breaking gene therapy called Zolgensma, a one-time treatment that can stop SMA in its tracks. It could mean the difference between life and loss, between a future filled with possibilities and one filled with pain. But this miracle treatment comes with an unimaginable cost—$3 million AUD approximately – We are not eligible for getting it through Medicare and our Insurance won’t cover it. We don’t have the funds and we are running out of time.
Time is slipping away. Every moment without treatment causes damage we can’t undo.
The earlier Arzoi receives Zolgensma, the better her chance at a healthy, happy life. But we can’t do this alone.
We are asking for your kindness, your generosity, and your belief in the power of community. No donation is too small. Every dollar brings us closer to saving our baby girl. Even if you can’t donate, please share Arzoi’s story. Spreading the word could reach someone who can help.
Arzoi is too little to fight this battle alone. But together, we can give her the future she deserves.
Share Arzoi’s Story. Help Her Win the Fight for Life.
Your voice can save Arzoi.Share her story with your family, friends, and community. Every share brings her closer to life-saving treatment.Be the reason Arzoi gets a second chance at life.
How you can help:
Donate – Every dollar helps get Arzoi closer to treatment. Click here
Fundraise for Arzoi – Run a fundraiser in your school, workplace, or community.
CLick here
FAQs
What is SMA?
Spinal Muscular Atrophy (SMA) is a condition affecting the muscles involved in movement, which progressively weaken and become wasted (atrophy) over time. This includes the muscles involved in general movement, swallowing and breathing. It is caused by the loss of specialised nerve cells called “motor neurons”, which are controlled by the brain and allow for muscle movement. Please read more at https://smaaustralia.org.au
What is Zolgensma?
ZOLGENSMA® stops the progression of spinal muscular atrophy (SMA) by helping children meet milestones, like sitting, standing, walking on their own, and more.ZOLGENSMA is a prescription gene therapy for the treatment of SMA in children less than 2 years old.
Read More
Why does it cost so much?
Zolgensma’s high cost in Australia, which was around $3 million before government funding, is attributed to the extensive research and development costs involved in creating a gene therapy, the complex manufacturing process, and the one-time nature of the treatment. The company, Novartis, justified the price by arguing it provides significant value by replacing lifelong treatments with a single, potentially curative,
dose for spinal muscular atrophy (SMA).
Why cannot Arzoi be treated under PBS as its free in Australia?
Arzoi cannot be treated under PBS scheme in Australia because her parents are on temporary visa and PBS is only for Permanent residents or Citizens of Australia .
Where will the money go?
All money raised will go towards Arzoi’s treatment . We will provide any receipts of payments for audit if needed.
You’re part of Arzoi’s journey
If you have a question, a message of hope, or just want to say hello, we would love to hear from you.Your kindness brings light to our hardest days — thank you for standing with us.
Address
Blakeview, Adelaide, Australia