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Support Smiling Sam: Help Us Give Him the Care He Deserves
Sam is 9 years old, full of joy, and facing the biggest health challenges of his life. He has Angelman Syndrome, a rare neuro-genetic condition, and he now urgently needs heart and foot surgeries, along with specialised care and equipment to keep him safe.
His mum is a single parent doing everything she can, but the financial load is overwhelming. We're raising funds to cover medical costs, therapies, home safety upgrades, and essential caregiving support.
Your help will make a real difference in keeping Sam safe, supported, and smiling.
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Meet Smiling Sam – My Sister’s Son, and a True Ray of Light
Sam is 9 years old and nearly always smiling. He brings joy to everyone he meets with his infectious laughter, huge grins, big heart, and the purest view of the world. His happiness is genuine, his spirit is inspiring, and his smile stays with you long after you’ve seen it.
He has Angelman Syndrome, a rare neuro-genetic disorder that affects his ability to speak and causes cognitive impairment and developmental delays.
Diagnosed in April 2017 at just 21 months, Sam has shown incredible strength ever since. While Angelman Syndrome brings daily challenges, it has never dimmed his light.
Sam communicates in his own unique and expressive ways. He makes specific sounds and often takes your hand to guide you where he wants to go. If he’s hungry or thirsty, he taps on the perspex divider between the kitchen and sitting room. More recently, he’s started selecting his own snacks, under supervision - bananas, raisins, and rice cakes are favourites!
He knows exactly what he wants. If he wants to go outside, he’ll head to the door and put his hand on the doorknob. If he wants to play with his water table, he’ll fetch the jug. He’s even mastered the iPad and he can swipe, adjust the volume, and switch between his favourite videos like a pro.
What’s Happening Now
A few weeks ago, Sam was rushed to hospital after swallowing something he shouldn’t have. This was a freak accident involving their rescue dog’s round, metal name tag and it happened due to Sam's sensory challenges and tendency to mouth objects.
Whilst in the process of removing it, doctors discovered that Sam has a bend in his oesophagus. Further tests revealed the rare and serious cause: a double aortic arch. This is an extra heart arch that wraps around the oesophagus and trachea and compresses them. He now urgently needs heart surgery.
Sam also currently has stridor, a noisy breathing condition caused by narrowed airways, linked to the compression from the double aortic arch.
As if that weren’t enough, Sam has a cavovarus foot deformity; his left foot is badly affected at this point in time. This is a painful, mobility-impairing condition requiring complex surgery, six weeks in a cast, and non-weight-bearing recovery. His right foot is also affected, and will eventually need the same treatment.
Sam doesn’t understand most instructions, and he’s always on the move, running, climbing, exploring. Keeping him still and safe during recovery will be extremely difficult, especially since his cheerful personality can mask pain, making it harder to assess how he’s feeling.
Why We’re Asking for Help
Sam lives abroad with his mum (a single parent) and big sister. His mum works full-time and provides everything Sam needs with incredible dedication. But the financial and practical pressures have become too great to manage alone.
Here’s what we need your support with:
Urgent Medical Needs
- Upgrading Sam’s health insurance to cover upcoming surgeries at the children's hospital, where the team now understands how to treat him safely, especially when it comes to anaesthesia. This must be carefully managed due to the way Angelman Syndrome affects his brain.
- Outpatient consultations at the children’s hospital, which aren’t covered under his current, basic plan and must be paid out-of-pocket.
Special Needs Equipment
- A new special needs stroller, as his current one no longer safely supports his size and weight. This stroller is essential when he is out for the day, as he cannot walk far and he gets tired quickly.
- A travel safe bed, to be used downstairs during recovery as Sam can’t be left alone and won’t be able to climb stairs.
- A replacement car safety harness (sourced from the US).
Home Safety Improvements
- Two damaged sofas need replacing. Sam has pulled apart the cushions and some of the sofa base (a sensory behaviour), which risks another ingestion incident.
- New baby gates. Five are currently installed around the sitting room, which is Sam’s designated safe space. These have all been in daily use for six years and are wearing out.
Ongoing Daily Care
- Yearly renewal of Sam’s live-in carer’s visa. His carer is essential, as Sam requires 24/7 supervision.
- Annual flight for his carer to return home (as required by her contract).
- Night-time nappies, still needed constantly and a continuous expense. Day-time nappies for when they go out, as they can't yet totally rely on him to let them know when he needs the bathroom.
- Durable pyjamas (sourced from the US) as Sam tears standard ones due to sensory needs.
- Loss of income from hospital stays, illness and medical appointments that require his mum to take time off work.
Therapy and Developmental Support
- Occupational therapy sessions to help Sam with everyday tasks, like dressing himself or learning to use a fork (he’s already great with a spoon!).
- Physiotherapy sessions to support his mobility and manage tight leg muscles.
- Swimming pool fees, to give Sam access to hydrotherapy, which helps with his movement, coordination, muscle strength, and overall well-being.
Right now, Sam has no access to therapy, as all resources have gone to urgent health and caregiving needs.
How You Can Help
Although Sam is nonverbal, he is full of understanding, curiosity, and personality. His cleverness and resourcefulness shine through in how he navigates the world, but his environment must be carefully adapted to ensure his safety, comfort, and development.
Every donation goes directly toward Sam’s care.
Your generosity will help this beautiful boy - who brings joy to everyone around him - get the medical treatment, therapy, equipment, and safety he needs to thrive.
More than anything, we want to keep that unforgettable smile shining bright, even through surgeries, recovery, and everything that lies ahead.
From the bottom of our hearts, thank you for supporting Sam and our family on this journey.