Our beautiful boy, Samuel (Sammy) was born at 40+6 weeks at Box Hill Hospital — after a healthy pregnancy full of hope and excitement for our first baby. However, moments after his birth, our world changed forever.

Sammy was born in unexpectedly poor condition and needed almost 20 minutes of resuscitation before his tiny heart began to stabilise. He survived against all odds, but the lack of oxygen caused Cerebral Palsy - Quadriplegia, affecting all four of his limbs and his core muscles.

Despite his daily challenges, Sammy radiates joy, curiosity, and determination. As his mum, I see his incredible spirit every day — the way he fights to hold his head up, reach for his toys, and giggle with his little brother, Leo.

Every day, moments like dressing, feeding, or simply sitting upright take immense effort, but he never gives up.

Sammy’s Story – Our Little Fighter

Sammy spent his first days fighting for his life in Monash Children’s Hospital NICU, treated for sepsis, hypotension, induced hypothermia, and seizures requiring multiple anti-epileptic drugs. I remember standing in shock, watching our newborn surrounded by tubes and wires. Six days later, the doctors explained that his MRI showed permanent brain damage and suggested we might not reinsert the breathing tube if he couldn’t breathe on his own. It was the hardest moment of our lives — but deep down, we knew Sammy was a fighter. When the tube was removed, he took his first breaths on his own.

At just three months old, Sammy was formally diagnosed with Cerebral Palsy - Quadriplegia on the background of Hypoxic Ischaemic Encephalopathy (HIE) - and classified as GMFCS level V.

Cerebral Palsy is a permanent neurological condition that affects movement, coordination, and posture.

For Sammy, this means his muscle tone is affected by both dystonia (involuntary muscle contractions that cause twisting and repetitive movements) and spasticity (increased muscle tightness when moving). These challenges make it difficult for him to control his movements, affecting his range of motion and daily comfort.

Sammy relies entirely on specialised equipment and full assistance for mobility, feeding, and personal care. He uses a wheelchair to get around and requires support for all activities, including bathing, dressing, and transfers. He is fed through a PEG tube but continues to learn and participate where he can — even beginning to request the toilet consistently, a huge step for him.

Despite everything, Sammy’s gentle nature and resilience continue to inspire us — and his little brother Leo (now 15 months old) absolutely adores him.

Giving Sammy Every Chance – Our Goals & Treatments

Our primary goals for Sammy are to enhance movement, improve tone regulation, promote cognitive development, and enhance overall quality of life.

These goals directly impact his daily comfort and progress:

• Tone management – to help him with dressing and movement
• Saliva management – to support swallowing and reduce discomfort
• Gut health – Sammy experiences severe reflux and frequent vomiting
• Cognitive support – to enhance developmental progress

To support these goals, we now have the chance to access Duke University’s Expanded Access Program (EAP) in North Carolina, USA — a groundbreaking research initiative using umbilical cord blood stem cell infusions.

For Sammy, we’re using Leo’s stored umbilical cord blood, giving him a unique opportunity to benefit from a matched, sibling-based infusion. Over the past 20 years, Duke’s team has safely performed over 1,000 infusions, with many families reporting improvements in mobility, cognition, communication, and daily function for children with cerebral palsy.

We have now booked this treatment for end of March just before his 3-week intensive therapy back in Melbourne.

While this treatment is not yet available as standard therapy in Australia, it offers something we’ve never had before: a real opportunity for meaningful change.

Unfortunately, this program is not funded by NDIS or private insurance, and the anticipated cost, including treatment, testing, and travel, is over $60,000–$70,000 AUD. We've already confirmed the eligibility with the siblings matching based on the HLA Typing report ($425 out-of-pocket).

To complement the stem cell therapy, Sammy will also work with Total Wellness Medical Center in Surprise, Arizona, which specialises in functional and biomedical therapies for children with neurodevelopmental conditions.

We’ve already begun testing, including the GI-Map gut analysis ($455 out-of-pocket), with further therapies planned.

These interventions are essential but not covered by NDIS, so we’re fundraising to support Sammy holistically — from the inside out. The anticipated cost for Total Wellness treatment, flights, and accommodation is $25,000–$30,000 AUD.

How You Can Help

Every contribution — no matter how small — brings Sammy closer to a brighter, more independent future. Your donations will directly support:

• Duke University EAP treatment and testing using Leo’s cord blood
• Functional therapies at Total Wellness
• Flights, accommodation, and essential travel costs

If you’re unable to donate, please share Sammy’s story — every share helps us reach more hearts.

Why This Means So Much

We know there are no guarantees. But even a small change — better control, less pain, clearer communication — would transform Sammy’s daily life. It would mean more comfort in his body, more playtime with his brother, and more opportunities to connect with the world around him.

Thank you for reading, sharing, and supporting our journey.

With love and gratitude,

Paula, Kin, Sammy & Leo