Help Give Little Niram a Fighting Chance at Life

Precious baby boy Niram was born on 19th September – just days ago. Instead of celebrating this joyful time, his family is facing an unimaginable challenge.

Niram has been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1), a rare and devastating genetic disease that affects the nerve cells controlling muscle movement. Without treatment, babies with SMA1 often don’t survive past their second birthday.

But there is hope.

A life-saving gene therapy exists that could give Niram a chance to grow, play, and be the little brother his 4-year-old sibling dreams of kicking a soccer ball with.

This treatment isn’t available in New Zealand but is offered in Australia at a cost of AUD 3.5 million. We are currently applying for a referral, and timing is critical as every day counts — Niram needs treatment at earliest for the best outcome. If the referral is accepted, we will need to cover physiotherapy and other out-of-hospital care expenses, estimated at $200,000, vital for his recovery and ongoing care. If the referral is not accepted, the funds will help support his parents to stay with him, focusing on his care and family without the added stress of returning to work.

Every donation, no matter the size, brings Niram closer to the future he deserves. Please help us give him his chance at life — and his big brother the playmate he dreams of. If you can’t donate, even sharing this means the world.

From the bottom of our hearts, thank you for your kindness and support.