Real Kids' Stories
1 in 20 kids face a birth defect or genetic disease. These are just a few of their stories.
Alex has an extremely rare condition known as Nicolaides Baraitser Syndrome.
When their son Jude was five weeks old, their dream was shattered.
When Leo was seven days old, parents Jessica and Timo’s world changed forever.
Childhood cancer is something that Jackie never thought she would have to deal with, but even years after her daughter Marley has gone into remission the threat of relapse is a daily fear.
Parents have all kinds of dreams for their children but Kanae just hopes that one day her daughter might see a dolphin jumping in the ocean, or maybe even a rainbow in the sky.
Beautiful Charlize was diagnosed with Propionic Acidemia and has already undergone two liver transplants.
Living with cystic fibrosis means Charlie takes 20 pills, does physiotherapy and uses a nebuliser every day of his life.
Ben’s cancer was so aggressive that he spent 96 nights in hospital, sometimes on chemotherapy for 22 hours at a time.
Mollyjane’s parents were told she wouldn’t survive a few days, so they celebrate every new day as a major miracle.
Briella spent 10 months in hospital to straighten her spine but came out with nothing but a smile and positive attitude.
Max’s genetic condition is so rare, his parents don’t even know what his lifespan will be. They just hope that research will change that.
Any genetic disease is a challenge, but Lachlan lives with multiple conditions that impact every aspect of his life.
Chloe and her twin sister Zara were just two years old when she was diagnosed with a stage five Wilms Tumour and started chemotherapy.
When little Ethan was born, his family had no idea what challenges their little boy would face.
Henry and his sister Rosalie both live with a very rare disorder known as LCHAD.
At four weeks old Iluka was diagnosed with a genetic disease which can affect her brain, heart, lungs, connective tissue, and bowel.
Linke’s family were told she wouldn’t make her second birthday, now that she is six years old every day is a blessing.
Four-year-old Naomi is a beautiful little girl diagnosed with SATB2 Associated Syndrome (SAS), a rare genetic syndrome.
At just 2 years old Max was diagnosed with Autism Spectrum Disorder, Global Developmental Delay, and ADHD.
Sasha realised something wasn’t right when her little boy, Quinn, couldn’t turn his head at the sound of his name.
Her two-first born children were a blessing to new mum, Bec, however, almost instantly she noticed something was wrong with Ruby.
Two-year-old Ryan may have an extremely serious genetic disease, but his parents will never let him feel like a victim.
Five year old Simon starts every day with a strict routine of physiotherapy and up to 25 pills to treat his Cystic Fibrosis.
At 3 months old, Dre got very sick with Kawasaki Disease and was in the hospital for nearly 10 days, needing two doses of immunoglobulin infusion.
Giovi and Charles were informed of their daughter’s initial diagnosis of Agenesis of the Corpus Callosum (ACC) during their 34-week routine ultrasound in January 2016.
Archer and his mum, Katie have something incredibly unique and heartbreaking in common. They were both diagnosed with Osteopetrosis.
When Ari was 10 weeks old, his parent’s Amie and Brett knew something wasn’t right when their baby boy was unsettled all day and night
Louise, Raymond, and Charli welcomed their beautiful twins Aria and Axel to the world on 5th October 2019. The twins started off their life like most other newborns.
Like so many first time mums, Rhiannon had nothing but gut instinct to tell her that something was wrong when Cooper was born.
It’s hard to have hope when you don’t know your child’s life expectancy, but Gary Boyer constantly thinks of how far research has come and what it has achieved.
The first 4 weeks of Emilia’s life was difficult to say the least. She was not sleeping and despite constantly feeding, she was dramatically losing weight.
Ethan is a kind-hearted and super active 9-year-old and his little sister, Addelyn, is a very determined selfless 4 year old.
When people ask Haley Holmes why she has become such a strong advocate for her son Hamish, she has an easy response.
Harper had perfect APGAR scores, but she was quite jaundiced.
Jerry has three siblings, a mum and dad who love him dearly, and a rare genetic disease called SPG-50 associated hereditary spastic paraplegia. Nobody knows how long someone with Jerry’s form of this disease can survive. But nobody has ever tried to treat it with gene therapy either.
Jonah was assisted into this world in the early hours of September 9th. He was completely floppy and needed oxygen, so he was taken to special care and placed in a humidicrib.
From the minute Keenan was born, his mum Pixie knew there was something terribly wrong with her beautiful boy.
Kush was born with a a unique mutation on his FoxG1 gene which has not been reported previously in any database or literature.
Maddy was born with Diastrophic Dysplasia and requires continual monitoring throughout her childhood.
It all started when mum, Sian, noticed that her beautiful baby girl, Maisie, was struggling to gain weight.
When Nixon was 2 weeks old, his parents Morgan and Jimmy received a call from the children’s hospital telling them to stop feeding him and bring him to the hospital immediately.