Real Kids' Stories
1 in 20 kids face a birth defect or genetic disease. These are just a few of their stories.
Being told their baby was blind was a shock for parents Irene and Jonathan, but the last thing they expected was for it to lead to a diagnosis of kidney cancer.
Every parent knows the joy of their firstborn hitting milestones, like walking and talking– but for Lucy and Peter it is something they may never experience.
When it comes to medical research – no one is more hopeful than the mother of a child with cystic fibrosis.
There is nothing quite as powerful to a parent as their child’s smile, but after Emilia was born, her mother Mary rarely saw a smile or eye contact.
When her only child was diagnosed with a genetic eye condition, mum Anita described the emotions as like “going through the stage of grief, watching your blind child grow up in a sighted world’’.
As a naturally gifted and determined young tennis star, Arato dreamt of one day becoming a professional player – until he started missing shots he had once found easy.
As first-time parents, Jacqueline and Chris had simple dreams for their future – a house filled with happy and healthy kids. Then everything they thought parenthood would be changed.
When Teresa gave birth to her fifth child, she was prepared for the chaos of bringing a newborn baby home, but nothing could prepare her for the blur of ambulance sirens, seizures, needles, endless tests and being told to prepare for a funeral.
When new mum Lykera was told her son would not live to see his first birthday, she struggled to comprehend the news and did not want to get attached to him – then everything changed when she discovered what she calls “the magic of research’’.
Like many babies, Sophia was constantly sick when she started day care, but when her eye started to bulge everything changed in what her parents describe as one “terrifying goosebump moment’’.
Beautiful Charlize was diagnosed with Propionic Acidemia and has already undergone two liver transplants.
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.
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.
Maddy was born with Diastrophic Dysplasia and requires continual monitoring throughout her childhood.
Harper had perfect APGAR scores, but she was quite jaundiced.
It all started when mum, Sian, noticed that her beautiful baby girl, Maisie, was struggling to gain 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.
Like so many first time mums, Rhiannon had nothing but gut instinct to tell her that something was wrong when Cooper was born.
Medical research has progressed in leaps and bounds for so many children impacted by genetic diseases, and yet for many more, the cause of their condition and how best to treat it is still a mystery - as is the case for four-year-old Charlie from Bendigo.
Many parents believe that once their child is diagnosed with a genetic disease, treatment begins, but for so many there are few answers – as was the case for one-year-old Teddy.
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.
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.
When people ask Haley Holmes why she has become such a strong advocate for her son Hamish, she has an easy response.
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.
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.
"It feels like she is a ticking time bomb," Cass said. "It is scary to think that if she has an unexplained nose bleed, or severe headache we have to get her to hospital immediately."