Your stories

Byron

Being diagnosed with Crohn’s disease in February 2024 did not stop Byron from achieving his dream of becoming the youngest Pilot to circumnavigate Australia.

Georgia

Georgia remembers always being labelled the “soft kid” because she would injure herself doing the things she loved most. Little did Georgia and her family know, it was something far more complex, a Function Neurological Disorder and Complex Regional Pain Syndrome.

Mia

Mia became a quad-amputee due to sepsis when she was four. Today, she is an active 11-year-old who enjoys playing the trombone, singing, reading and competing in athletics.

Delilah

Following a fall from her skateboard, it was suspected that eight-year-old Delilah had bumped and sprained her knee. Her parents were not expecting a diagnosis of sepsis.

Lewis

Lewis lost his right leg in a boating accident at nine-years-old. Nine years later, he can call himself a Paralympian.

Sophie

Sophie was diagnosed with a rare degenerative condition at 14 months old that affects her tissues, organs, joints and bones.

Ruby

Ruby was diagnosed with Hypoplastic Left Heart Syndrome when her mother was 21 weeks pregnant. She underwent three open-heart surgeries before she was four months old.

Ricky

Ricky was born with a rare deficiency disorder, that causes him to have up to 20 debilitating seizures a day.

Jacob

Jacob was born with achondroplasia the most common form of dwarfism.

Aaliyah and Mya

Aaliyah and her sister Mya have a lot in common like their love of playing, puzzles and adventuring outside – and cystic fibrosis, a genetic condition that affects the lungs and digestive system.

Abi

5-year-old Abi has already had to overcome more challenges than others do in a lifetime after a car accident left her paralysed from the neck down.

Alex

Alex was diagnosed with Duchenne muscular dystrophy (DMD) at two years of age.

Alfie

Shortly before Alfie’s third birthday, his mum, Jess noticed an unusual reflection in his left eye.

Alice

Alice is a confident, chatty Prep student who has grown to love the little things that make her a bit different from her classmates.

Alice

Having been born with a hearing loss, Alice just loves her bi-lateral cochlear implants, or ‘new ears’ as she calls them.

Aliona

When Aliona started feeling breathless, she thought it was just a sign she was unfit. She never expected doctors would find a tumour.

Amelia

Amelia lives with the rare lifelong disease Epidermolysis Bullosa (EB) which causes the skin to be very fragile.

Amy

We were scared - we didn’t know anything about a cleft of the soft palate but knew Amy would fight her way through this,” Karen said.

Annabelle

Annabelle’s journey began in August 2020 when, at the age of 9, she became seriously unwell with abdominal pain.

Anthea

Almost two years on from a near-fatal stroke experience, Anthea from Toowoomba is a happy, healthy toddler.

Anthony

Thanks to the two cochlear implants four-year-old Anthony received, he will be able to savour every sound of the classroom when he starts school this week.

Arisha

Arisha was diagnosed with Ewing’s sarcoma in her left shoulder in December 2015. After undergoing chemotherapy for two months, Arisha underwent surgery.

Arwen

Arwen’s parents thought their active nine-year-old girl had just picked up a stomach bug however, the illness meant they missed the tell tale signs of Type 1 Diabetes.

Asha

Seventeen-year-old Asha was diagnosed with Ewing Sarcoma, a type of bone cancer that mostly affects children and young people.

Atticus

Atticus was born at the Gold Coast University Hospital in July 2015 and needed oxygen after a difficult birth.

Ava

Ava from northern New South Wales is an agile and athletic young girl and you would never guess her health condition.

Bayley

Three-and-a-half years ago, our lives got turned upside down when Bayley was diagnosed with T-Cell Acute Lymphoblastic Leukaemia.

Caiden

Caiden was diagnosed with a very rare form of nephrotic syndrome, affecting between one and three children in every 100,000 worldwide.

Chelsy

Chelsy's mum Nicole had some concerns regarding Chelsy’s development – particularly with the way her ribs were forming.

Chloe

Chloe suddenly began to stumble a bit while walking. Two weeks later, her Mum, Holly, noticed that her legs felt “cold as ice” and soon after she couldn’t move them at all.

Connor

Connor is lucky to be alive after his skull was shattered after a cliff fall in March. The injury meant he has to learn to speak, read and write again, but his determination is inspirational.

Daria

Daria was diagnosed with the rare genetic condition Hurler Syndrome when she was just seven months old.

Dominic

Dominic, a bright and bubbly seven-year-old and devoted Brisbane Roar fan, has not had an easy start to life.

Dominique

Dominique’s heart journey began soon after she was born in 2014 when she came into the world six weeks premature.

Eliana

A fun family outing ended in an emergency trip to hospital for 17-month Eliana, because someone did not take the time to safely extinguish their camp fire.

Eliot

Eighteen-month-old Eliot has spent most of his short life in hospital, yet staff say he was one of the happiest babies they had known.

Ester

Ester was diagnosed with congenital heart disease while still in her mother’s womb, she needed open-heart heart surgery before her first birthday to repair faulty heart valves.

Ethan

Ethan, was diagnosed with a milk allergy at 10 weeks old but it wasn’t until his first birthday that his family discovered the severity of the allergy when he went anaphylactic shock after accidentally drinking some milk.

Everly

When Everly was just 18 months old, she was diagnosed with stage four neuroblastoma - an aggressive form of cancer that has a poor prognosis.

Future’s looking bright for Evie

Evie was struggling to keep up in her first year of school. Reading and writing tasks were an everyday challenge and she became overwhelmed with the day-to-day activities of the classroom.

Genevieve

Genevieve was born with the rare genetic disease alpha1-antitrypsin deficiency (A1AD), an incurable condition which limits the body’s production of a protein that protects the lungs and liver from damage.

George

George is your typical mischievous, dinosaur-loving three-year-old, who considers himself to be the fifth wiggle.

Grace

Grace was born at 29 weeks with anotia (absent ear) and aural atresia (absent ear canal), which meant she was missing the entire ear on her right side.

Grace

Three-year-old Grace was diagnosed with juvenile idiopathic arthritis (JIA) not long after her second birthday.

Harmony

Harmony’s heart story began when she was still inside her mother’s womb which she shared with her twin sister, Mya.

Harrison

Harrison began showing difficulties with communication and social interactions but his mum, never imagined a genetic disorder would be the underlying cause.

Harry

Harry was six months old when he tried egg for the very first time. Two hours later, Harry vomited continuously until he turned white, cold and floppy.

Imogen

Imogen’s life was turned upside down when what she and her parents thought was a lingering rowing injury ended up being stage 4 osteosarcoma - a rare and aggressive form of bone cancer.

Indianna

Indianna was diagnosed with clubfoot when her mum, Jennifer, was only 12 weeks pregnant.

Isabel

Isabel, was diagnosed with dominant dystrophic epidermolysis bullosa (EB) at the age of 10.

Isabella

What began as a normal gymnastics training session, ended in the discovery of a life-changing health challenge for Isabella.

Isabelle

Isabelle thrived in her first three months of life but her great start ended suddenly and dramatically when she fell ill with a severe lung infection.

Isla

In November 2017 Isla, her mum Katie, and ten-week-old brother Flynn were getting ready for a day out when Isla had her first seizure.

Jake

Jake, 18, has battled mental health issues since his early teens. When anxiety and depression overshadowed his life, his love of music helped his recovery.

Jamarl tunes in to his full potential

Jamarl had poor hearing and would rarely speak when he first attended the Deadly Ears clinic in Cherbourg in February 2018.

Jarvis

Like most seven-year-olds, Jarvis, just wants to run, jump and play but he lives with a very rare condition that makes physical activity challenging.

Joey

Joey’s life was turned upside down when a leisurely horse ride, something he had enjoyed countless times before, ended with him fighting for his life in intensive care.

Katie

Katie was diagnosed with Type 1 diabetes in January 2014.

Kyran

Five-year-old Kyran was diagnosed with a rare life-limiting condition as a baby, but he continues to defy the odds.

Lara

Lara was diagnosed with biliary atresia at six weeks of age. Lara’s family were told it was a matter of when, not if, Lara would need a liver transplant.

Lewis

Lewis from Darwin, experienced unexplained dizziness and nausea. A tumour the size of a large egg was found on Lewis’ brain.

Lexie

Lexie was diagnosed with a cleft lip at birth and a cleft palate the day after she was born.

Lindsay

Fifteen-year-old Lindsay suffered from persistent pain from the age of 10, but has learned to enjoy life again after deciding to fight his fears.

Lucas

Lucas was born with bilateral cystic dysplastic kidneys, a rare congenital anomaly of the kidney and urinary tract.

Lucy

Lucy’s parents Matt and Inga say she is the ‘shining light’ of their family and refuses to let Spina Bifida dampen her determination and zest for life.

Lucy and Thomas

When Lucy started showing symptoms of Type 1 diabetes in May 2021, no-one expected both Lucy and her older brother Thomas to be diagnosed with the condition just three days apart.

Madison

Madison was just four-years-old when she developed a rash that was eventually diagnosed as juvenile dermatomyositis – a rare autoimmune inflammatory muscle disorder.

Maeve

Maeve was admitted to hospital for the first time at 5 months old when a case of bronchiolitis landed her in intensive care for a week.

Maggie

Maggie was diagnosed with achondroplasia – a genetic disorder that results in dwarfism – via ultrasound when she was 31 weeks in utero.

Mark

It was during an ultrasound at 18 weeks gestation that the parents of Mark, found out he had a neural tube defect.

Mason

Mason was born with Allan-Herndon Dudley syndrome, also known as MCT8 deficiency, a rare condition that causes intellectual disability and problems with movement.

Mason

Within 24 hours of he and his twin sister Chloe being born 10-weeks prematurely, Mason was diagnosed with a serious bowel defect.

Max

At the age of 10 and within days of being admitted to hospital, Max was diagnosed with a rare type of brain cancer.

Melina

Melina was just two-years-old when her parents noticed she was asking for water more frequently. They never thought this thirst would lead to a type 1 diabetes diagnosis.

Mia

Mia lost her arms and legs to sepsis when she was four, but today, according to her mum Amy she’s as active as any other eight-year-old.

Micah

A routine newborn screening test identified a potential issue with Micah’s hearing when he was just four days old.

Miranda

Miranda was diagnosed with retinoblastoma (a type of cancer in the eye) just before her second birthday.

Moana-Lynne

Moana-Lynne was diagnosed with bilateral, severe-to-profound hearing loss at birth but she hasn’t let that hold her back.

Myrah

After undergoing 12 rounds of chemotherapy Myrah won this early battle with cancer, but unfortunately, nearly 4 years later, it would return to another area of her body.

Niall

At just two-days old, Niall stopped breathing after a feed and his parents Maria and Lee had to perform CPR until ambulance officers arrived.

Noynoy

Moree eleven-year-old, Troy Junior, better known as Noynoy, has been undergoing rehabilitation for the past six months after a quad bike accident.

Olivia

Olivia was born 13 weeks early on Christmas Day in 2017, with parents Tash and Nigel calling her their “Christmas miracle”.

Osian

8-year-old Osian managed to sail through the first few months of Prep, but things really started to look up when he put on his first pair of glasses.

Patrick

Like other teenage boys, 14-year-old Patrick loves sport, gaming and chatting with friends. However, his mum Karen noticed from an early age, that Patrick seemed unable to regulate his emotions, and regularly felt stressed and anxious.

Piper

Piper underwent a routine newborn screening test shortly after she was born and was diagnosed with Cystic Fibrosis (CF).

Poppy-Rose

Poppy-Rose was just seven days old when she underwent open-heart surgery – her heart was no bigger than a walnut at the time.

Riley

From the outside, Bracken Ridge local, Riley, looks like a typical four-year-old. However, inside his body, it’s a different story.

Roman

What started as symptoms of a cold, like a croupy cough, noisy breathing, crusting around the nose and a rash had worsened to severe breathing difficulty.

Saara and Amy

Sisters Saara, 13, and Amy, 11, share a special bond that they wish they didn’t - Type 1 diabetes, one of the most common chronic childhood conditions.

Sam

Eleven-year-old Sam of Tweed Heads recently had heart surgery at Queensland Children's Hospital and is now the “proud owner” of a brand new pacemaker.

Savi

Savi‘s first six weeks of life were problem-free, but things changed quickly after her mother noticed a yellow tinge in her daughter’s eyes.

Sending Carter to the Moon

Carter developed a Future Story that sent him to the surface of the moon and enabled him to meet Laika, the Russian dog that was the first to orbit Earth.

Sophie

Sophie was playing with her cousin at home in 2010, when she came out of the playroom holding her leg and then suddenly collapsed.

Sophie

After being referred to the Queensland Interdisciplinary Paediatric Persistent Pain Service Sophie developed strategies to overcome her pain.

Sophie

Sophie was playing with her cousin at home when she came out of the playroom holding her leg and then suddenly collapsed.

Sophie

At 18 months, Sophie was diagnosed with autism, after her parents Paola and Cristian noticed some developmental delays.

Spencer

Spencer was playing happily with his truck at his Brisbane home one day when he tried and failed to stand up.

Stuart

Stuart was born with Down syndrome, which brings with it health challenges. But, Stuart says that Down syndrome has never stopped him from doing anything.

Tegan

Tegan’s experience with CRPS, began shortly after undergoing spinal surgery at the Queensland Children’s Hospital to correct her scoliosis at 16.

Tobey

Through early testing and detection Tobey has learnt to live with type 1 Diabetes whilst being able to enjoy his quality of life.

Toni and Hayley

After an emotionally charged four years of unsuccessful fertility treatments, Toni and Trent fell pregnant with their first child Hayley, in 2012.

Tyler

Tyler, 13, loves performing magic and playing the drums, with his clever hand skills all the more amazing because he almost lost his entire left hand.

Tyler

Tyler’s ‘HeartKids’ story began before he was even born when a routine ultrasound at 19 weeks revealed something was wrong with his heart.

Van

Van started experiencing epileptic seizures in 2016, but it would take four years to uncover the rare disease behind his condition.

Will

William (Will) Porter, now 20, was diagnosed with a rare and serious congenital heart condition shortly after birth.

William and Harry

Brothers, William and Harry were both diagnosed during the newborn screening test with a rare genetic inborn error of metabolism (IEM) disorder known as Phenylketonuria, or ‘PKU’.

Zayden

Zayden was just three weeks old when his mum, Adele, noticed some things weren’t quite right – he’d been having issues eating, and his eyes were flickering.

Zayviar

Zayviar is living with an extremely rare x-linked chromosomal defect – a condition that affects only seven people in the world, who are all within Zayviar’s family.