30 Years of Making a Difference

Birthdays are so much more than cake and candles. They’re celebrations of our stories, the lives we lead, and how we’ve made an impact on the world around us.

We’re celebrating our 30th birthday with those who matter most — the kids whose lives we’ve changed through the research we do.

Here, you’ll find some of their stories, just a small snapshot of the abundance of work we’re doing and remain committed to pursuing. Click on these beautiful photos below and take the time to read the remarkable stories of these kids. They’ll change your life like they’ve changed ours.

They are the reason we keep asking and answering the difficult questions; we want to help kids here, and around the world, be just that — kids.

Aboriginal and Torres Strait Islander people should be aware that this website may contain images or names of people who have since passed away.

Victor

Victor

8 years old

Cystic fibrosis

Victor is an amazing artist. He uses his wonderful imagination and drawing skills to escape his hospital bed and, together with his ‘super-powered’ teddies, he goes on action-packed underwater adventures with his favourite creatures – sharks. These adventures help to fill the many hours Victor spends in hospital, when his body is trying to fight off infections.

Victor was diagnosed with cystic fibrosis via the heel prick test he had as a newborn. Cystic fibrosis affects the lungs, airways and digestive system, and is the most common life-shortening genetic disease affecting children. Eight years on, Victor has airway physiotherapy twice a day and regular medications to keep his lungs healthy.

The cystic fibrosis research at Telethon Kids is recognised as one of the world’s leading research programs, and it has led to a paradigm shift in the understanding of early lung disease. Our researchers are tackling lung infections that are resistant to antibiotics, so that kids like Victor, don’t just get to be kids; they get to go on great adventures and one day perhaps swim with sharks.

Learn more about our cystic fibrosis research.

 

Victor

Victor

8 years old

Cystic fibrosis

Victor is an amazing artist. He uses his wonderful imagination and drawing skills to escape his hospital bed and, together with his ‘super-powered’ teddies, he goes on action-packed underwater adventures with his favourite creatures – sharks. These adventures help to fill the many hours Victor spends in hospital, when his body is trying to fight off infections.

Victor was diagnosed with cystic fibrosis via the heel prick test he had as a newborn. Cystic fibrosis affects the lungs, airways and digestive system, and is the most common life-shortening genetic disease affecting children. Eight years on, Victor has airway physiotherapy twice a day and regular medications to keep his lungs healthy.

The cystic fibrosis research at Telethon Kids is recognised as one of the world’s leading research programs, and it has led to a paradigm shift in the understanding of early lung disease. Our researchers are tackling lung infections that are resistant to antibiotics, so that kids like Victor, don’t just get to be kids; they get to go on great adventures and one day perhaps swim with sharks.

Learn more about our cystic fibrosis research.

 

Adam & Zach

Adam & Zach

5 & 1 years old

Early child development

At Telethon Kids Institute we know how amazing babies' brains really are, and how astonishing their brain development is in the first three years of life. Up to a million nerve connections are triggered every second that a baby is actively engaged – responding to voices, smiles and meaningful interactions.

Repeated, these connections form pathways that shape their thinking and emotional patterns for life and influence their approach to learning, relationships and tackling challenges.

Lucky for Adam and Zach, their parents know this too, and their early years have been filled with meaningful moments to help build their young brains.

Adam’s dad has been reading to him since he was born and now at 5, Adam has a big love for books. And his little brother Zach, has a big love for his big brother.

Zach and Adam’s worlds are filled with beautiful family interactions that are laying a great foundation for these two special boys.

Learn more about our early child development research.

Angus

Angus

17 years old

Sarcoma & Leukaemia

Anyone who calls Angus a mate should count themselves lucky – this kid is cool. Humble, kind, comfortable in his own skin and with ridiculously good taste in music, Angus leaves a lasting impression with every conversation.

Angus is also a cancer survivor. He has survived cancer not once, but twice. At the age of 11, he was diagnosed with Ewings Sarcoma, an aggressive cancer of the bone and tissue that mostly affects children. He had no symptoms, no pain, just a lump on his leg. After 10 months of intense chemotherapy and countless surgeries, Angus was declared in remission but his battle with the harsh side effects of the treatment continued. Then in 2019, after five years of being ‘cancer-free’ Angus was diagnosed with Leukaemia, had his leg amputated and went on to battle that cancer too.

It’s not just finding a cure to these devastating cancers that motivates our cancer researchers at Telethon Kids Institute. We are working to discover new and more effective therapies with fewer debilitating side effects, so that when kids like Angus have beaten their cancer, the battle is over, and they can get back to just being kids again.

Discover what we're doing in the field of children's cancer research.

Ari

Ari

5 years old

Muscular dystrophy

Ari may only be 5 but he’s a genius on the Xbox – so much so that dad Zy doesn’t even bother trying to challenge him anymore. It might have something to do with the joystick on Ari’s wheelchair – and the fact he could probably outpace and out-manoeuvre most real-life race car drivers. But really, he’s just a bit of a whiz all round. Lego, iPad, cuddling, smiling … Ari’s got a black belt in each, and Zy’s pretty sure that one day he’ll add ‘cured cancer’ or some other amazing scientific breakthrough to his resume.

In the meantime, his family will content themselves with contributing in any way they can to muscular dystrophy research. Ari has a rare form of the condition, which means that apart from having severely limited mobility, he wakes up about a dozen times a night – not great when your natural instinct is to go full tilt at everything. It’s because of kids like Ari that Telethon Kids Institute researchers are working hard to unlock better ways to help children with neuromuscular conditions to sleep and breathe better at night-time. So kids can be kids … at any speed they like.

Learn how Telethon Kids is changing the lives of kids with disabilities. 

Aroha

Aroha

10 years old

Acute Lymphoblastic Leukaemia

Aroha’s always known just when someone needs a cuddle. She’s an old soul, perceptive and funny. A kind kid who would do anything to make someone else smile – especially if it’s another child dealing with cancer. In 2016 when Aroha was 6, she was diagnosed with acute lymphoblastic leukaemia – a type of cancer that affects the blood and bone marrow.

Aroha underwent almost 3 years of chemotherapy and made many friends during her time in the hospital, some who did not survive. It’s for them that she is learning as much as she can about cancer and studying so hard at school. One day perhaps she will join us at the Cancer Centre at the Telethon Kids Institute, in the hunt for better, gentler treatments for children fighting cancer. So that every kid has the opportunity to just be a kid.

Discover what we're doing in the field of children's cancer research.

 

Ashlyn & Kayleigh

Ashlyn & Kayleigh

13 & 11 years old

Type 1 Diabetes

When normally energetic and sporty Ashlyn struggled to stay awake, Dad Ryan suspected a virus but nothing a good night’s sleep wouldn’t fix. By morning, things had taken a turn for the worse. Ashlyn had started vomiting and was barely conscious. He rushed her to hospital where she spent the next three days in intensive care, her blood glucose levels dangerously high.

Ashlyn was diagnosed with type 1 diabetes — a 24/7 lifelong disease triggered by the immune system attacking the insulin-producing cells of the pancreas. In an unbelievable twist, barely three weeks after Ashlyn’s diagnosis, younger sister Kayleigh, a promising ballet dancer, was also diagnosed with diabetes. For the sisters, keeping up with competitive race walking, running and dancing has been vital to managing their disease, which affects another 160 children in WA each year.

While a cure remains the ambition, Telethon Kids researchers are working to improve the lives of young people living with this chronic disease so that they can can grow up to become healthy adults — and Olympic athletes and ballerinas.

Learn more about our research in Type 1 Diabetes.

Dartanyon

Dartanyon

9 years old

Asthma

Watching Dartanyon play with his brother and race around like a little Energizer bunny, it is hard to believe that this very same kid has spent countless nights in a hospital bed struggling to breathe. But for his mum Michelle, the fear and helplessness that a parent feels watching this struggle for breath is all too real.

Diagnosed with severe asthma at 18 months old, Dartanyon was a familiar face at the children’s hospital – with more than 10 hospital admissions, countless visits to the emergency department and time spent in ICU before he was five.

And while every parent just wants their kids to have a normal childhood and do what kids do – from sports carnivals to sleepovers – families living with a child who has severe asthma are constantly on high alert. Every unseen germ or virus could lead to a stay in hospital for kids like Dartanyon.

At Telethon Kids we don’t think that’s fair. Which is why our researchers are working to develop solutions such as an asthma vaccine so kids like Dartanyon can breathe easy, and just get on with being kids.

Learn more about our respiratory research.

Ditza

Ditza

29 years old

Raine Study participant

Research pretty much runs in the veins of 29-year-old Ditza Teng. Signed up to the Raine Study – one of the world’s biggest ongoing studies of pregnancy, childhood, adolescence and adulthood – before she was even born, she’s been contributing to our understanding of family and children’s health her whole life. And it’s not just Ditza. For the Tengs, it’s been a multi-generational gift. Her mum is part of Raine. Ditza is part of Raine. And now Ditza’s son Jeremiah looks set to join the next generation of Raine Study kids. As if that’s not enough giving, Ditza has found yet another way to contribute to medicine: as a medical doctor – a career choice she attributes in part to her lifelong involvement in research.

At the Telethon Kids Institute, working with – and for – families like Ditza’s is built into our DNA. Without community participation, we simply couldn’t do what we do. We want kids and families to feel a part of our research which is, after all, all about them. That’s why we build community involvement into every layer of our work – to remind us of the vision which has driven us for 30 years now: helping kids to be kids.

Learn more about the Raine Study. 

Drew

Drew

19 years old

Trans Pathways ambassador

His teachers always called Drew bubbly. He calls himself creative, loud and pretty fun to be around. You get the sense that, at 19, he knows himself pretty well. Six years ago, Drew took a massive step, coming out to his family as trans after having spent two years nursing the realisation that he didn’t fit the gender identity he’d been given at birth. He has been fortunate to be well supported by both his family and his school as he has undertaken the transition process over the past few years. But he knows many other young people in his position aren’t so lucky.

In 2017, the Telethon Kids Institute’s landmark Trans Pathways report revealed that young trans people are at high risk for suicide, serious depression, and anxiety – largely due to the way others react to and treat them, as well as poor access to services and support. Almost half of the 859 young people surveyed had attempted suicide and almost 80 per cent had self-harmed.

It’s statistics like these that drove Drew to become a Trans Pathways ambassador, joining with Telethon Kids researchers to help educate others and help find better ways to support trans and LGBTQI young people. So that kids can be kids – proud of who they are, whoever they may be.

Learn more about the Trans Pathways project at Telethon Kids. 

Isla & Miles

Isla & Miles

9 years old

Autism Spectrum

Nine-year-old twins Isla and Miles might have an autism diagnosis in common, but that’s where the similarities end. With a giant imagination and a fascination for tiny things, Isla loves immersing herself in nature and excitedly sharing her vast knowledge of unusual creatures with those around her. And for sports-loving Miles, when he’s not playing footy or scoring runs on the cricket pitch like his hero, The Don, he’s memorising statistics to one day become a sports commentator.

While they know there will be challenges ahead, parents Jenelle and Ian simply want their kids to be happy, a vision we share at Telethon Kids. Through CliniKids, our dedicated clinical service for autism and developmental delays, we’re giving families like the Russos access to individually tailored, holistic supports and the very best evidence-based therapies in the world so that children like Isla and Miles can live their best lives.

Learn more about CliniKids.

 

James

James

18 years old

Type 1 diabetes

When James was diagnosed with type 1 diabetes at the age of 10, he didn’t know anyone with diabetes and felt quite alone in dealing with the chronic disease. Back then, he used painful insulin injections to manage his condition and round-the-clock monitoring to keep his levels in check.

Fast forward eight years, and things have changed markedly. The development of new technologies and therapies by diabetes researchers like our team at Telethon Kids Institute, has led to dramatic improvements in managing and living with the disease for James and many others like him.

While COVID-19 may have put a temporary halt on James’ plans to study landscape architecture in Melbourne, it’s freed up more time for his other passion – rally car racing. It’s the perfect sport for James because it requires stamina, muscle control and concentration. It also allows him to have a pitstop when he needs to keep his blood glucose levels in check.

Type 1 diabetes is the most common childhood chronic disease and a big area of focus for our researchers at Telethon Kids. We are working alongside diabetes advocates like James to develop more effective therapies, improve the quality of life for those living with this lifelong disease, and ensure these all these kids have the childhood they deserve.

Learn more about our research in Type 1 Diabetes.

Jasmine

Jasmine

26 years old

Participant, Cervical Cancer Vaccine Research

Inspired by her mum Jennifer, an amazing Telethon Kids researcher, Jasmine put her hand up in 2007 as a healthy ten-year-old to participate in the trial of a new vaccine. The vaccine was developed to protect against types of Human Papillomavirus (HPV) which cause approximately 90% of cervical cancer. The trial was a clear success and spurred the development of a school-based vaccination program for girls and boys across Australia.

Fast forward to 2020 and Australia now has one of the lowest cervical cancer rates in the world and is on track to be the first country to eliminate cervical cancer as a result of this program. Now 26, Jasmine has finished a degree in health science and is now studying occupational therapy. A Fiona Stanley super-fan, Jasmine is a proud supporter of Telethon kids and a volunteer at Perth Children’s Hospital.

Find out more about participating in research at Telethon Kids.

 

Jaydan

Jaydan

12 years old

Rare disease, DiGeorge Syndrome

At four years old, Jaydan was placed into palliative care while his family prepared themselves to say goodbye to their beautiful little boy. Luckily, Jaydan had other plans.

Born with complex congenital heart disease and DiGeorge Syndrome, Jaydan’s heart was unable to pump enough oxygen around his little body so even tasks like walking would see him turning blue. Jaydan spent most of his childhood in hospital and on oxygen, fighting with all his might.

But after his third open-heart surgery, at the age of 11, Jaydan’s optimism and determination paid off. Today, Jaydan isn’t just walking again; he’s doing the moonwalk – turning his living room into a stage and dancing to his favourite 1980s pop tunes.

Rare diseases affect one in ten children in Australia and 70% of these cases go undiagnosed. At Telethon Kids Institute our researchers are working to help improve diagnosis, treatment, and prevention for children with rare diseases so kids like Jaydan, can just be kids.

Learn more about our rare diseases research.

Kaide

Kaide

12 years old

Morquio Syndrome

Kaide is a kid that loves to go fast. Whether it is burning around on his Segway or flying along on the back of his Dad’s jet ski with the wind in his hair, Kaide relishes the feeling of freedom and speed. So his decision to be a fighter pilot when he grows up makes perfect sense to those who know and love him.

From 18 months of age his parents knew something wasn’t quite right, but it took over three years, countless visits to specialists and many tests, before they eventually had a diagnosis for Kaide. Morquio syndrome is a rare and progressive disease that affects only one in every 200,000 children. It impacts a child’s appearance, growth, organ function and physical abilities.

Our Precision Health researchers at Telethon Kids are at the forefront of global rare disease research; using state-of-the-art technology like 3D facial imaging to help diagnose and better understand rare diseases like Morquio syndrome. Kaide is proud to be part of this research because he knows he is helping children just like him from all over the world to get a diagnosis and find new preventions and treatments for these rare diseases.

Learn more about our rare disease research.

Kim

Kim

32 years old

Neural tube defect

At 32 years of age, Kim Robins talks a lot about how he hopes to make an impact on the world – as if it’s something he hasn’t already achieved in his remarkable life to date. A wheelchair basketball champ who was gearing up for the Tokyo Paralympics before COVID-19 got in the way, nearly three decades ago he set in motion a world-first public health campaign that has since saved thousands of lives and prevented disabilities in too many children to count. One wild, wintry day in 1992, Kim had his photo taken in a cabbage patch with national living treasure Professor Fiona Stanley – part of a bid to highlight the power of folate to prevent neural tube defects like the one with which Kim was born. Our researchers at Telethon Kids Institute were part of this landmark discovery. This campaign, and their efforts to see bread fortified with folate, are hailed as one of the top 10 public health achievements of the past 20 years.

Kim is now a dad himself to a beautiful boy whose mum took folate throughout her pregnancy, thanks to a long-ago campaign which, in its own way, changed the world. It’s because of kids like Kim – and his little bloke, Owen – that Telethon Kids Institute researchers continue to study and find new ways to prevent birth anomalies. So that every kid has the opportunity to just be a kid.

Learn more about our landmark folate research.

Lenix & Liam Jr

Lenix & Liam Jr

11 months old

Middle ear infections

Twin sons of West Coast Eagles player Liam Ryan, Lenix and Liam Jr, are lucky boys. Not only are they happy, healthy, busy babies, with great footy-playing genes; they have been getting their ears checked by Telethon Kids researchers for signs of middle ear infections from two months of age.

It was a very different story for big sister River, who suffered multiple ear infections and is among the 50 per cent of Aboriginal children affected by painful ear infections and hearing loss. Many of these kids spend over two years on a waitlist for specialist treatment, and the long-term effects caused by this lengthy delay last a lifetime. When you can’t hear, it affects learning, so kids face issues with language, behavioural and educational development, as well as poor mental health outcomes and job prospects in adulthood.  

The good news is this hearing loss can be prevented, and our researchers at Telethon Kids are part of a big team working to do just that. By introducing telehealth programs, cutting waitlists down to only ten days and providing kids with access to grommet surgery, we can ensure that ear infections don’t prevent kids from receiving the best possible start in life.

Learn more about our research into ear health.

Lucy

Lucy

Passed at 2 years old

One Shot Flu Vaccine

Lucy passed away at 3:05am on the 24/7/2019 with her mum and dad by her side, just 5 days after having her first fever. Only days earlier, she was running around with her big sister Sofie and helping her Dad out on the farm. Nothing was too hard, too high or too risky for Lucy. Vibrant, sassy and determined, Lucy loved her family and she was loved by many.

Influenza is the most common vaccine-preventable cause of hospitalisation and infection-related death in children, more common than whooping cough and meningococcal disease. At Telethon Kids Institute, we are on a mission to stop it. We have the technology, knowledge and capacity to spearhead the development a single-shot flu vaccine that will work for life.

No parent should ever have to go through what the DeLuis family has gone through. But by telling her story and advocating for solutions they hope to prevent others from going through such loss. This is beautiful little Lucy’s legacy.

Learn more about our research into early flu protection.

Lucy

Lucy

12 years old

Hard of hearing

Lucy Macri is 12 and, in the time-honoured tradition of millions of pre-teens who’ve come before her, is obsessed with a boy in a band. Specifically: Harry Styles from One Direction. She’s pretty sure she could persuade him to give her a job as his personal photographer, if only she could travel to England right now. Given that’s off the cards for a while, she’ll have to make do with daydreaming about him at school. Determined and funny, Lucy hasn’t always had it easy at school.  At 20 months of age she was diagnosed with profound severe hearing loss – just like her mum, Jenelle.

A cochlear implant hidden under her hair helps, but there are certainly things that others, including teachers and peers, could do to help make life easier in the classroom. At the Telethon Kids Institute we know that children and young people who experience permanent disability can face even greater challenges than most kids in their social and emotional development. That’s why we have teamed up with partners to develop a range of resources for children, families and teachers to better support Deaf or hard-of-hearing kids at school. Because every kid deserves to belong.

Read more about our BELONG project here.

Marlee

Marlee

9 years old

Rare disease, Rett Syndrome

Marlee was born a beautiful, healthy baby girl. She rolled over at six months, smiled early, babbled happily and her parents celebrated every one of these milestones with her. But at seven months of age something changed. Marlee started to lose the ability to do things she could previously do and at the age of two, was diagnosed with Rett syndrome – a rare disease that affects approximately 1 in 10,000 female births in Australia.

Marlee and her family met our Telethon Kids team of Rett syndrome researchers when she was first diagnosed, and they have been a lifeline on the journey ever since. This team of experts manage the only international Rett syndrome database in the world, right here from Perth. They are working with children like Marlee to learn more about the course of the disease, find the best possible treatments and ultimately, a genetic cure for Rett syndrome.

At 9, Marlee is a happy, cheeky and determined kid who has taught the world around her what it means to never give up. Just like other kids her age, Marlee loves music, horse riding, her blue heeler Dixie, and wants to go to Uni one day. Her other ambition is to be a mentor to younger children with Rett syndrome so she can show them what it means to live life to the fullest.

Learn more about Rett Syndrome research at Telethon Kids.

Maya

Maya

12 months old

Severe food allergy and anaphylaxis

A child’s first little taste of chocolate at Christmas time should be a moment of pure joy, but it wasn’t for 12-month-old Maya. Instead, it was her first anaphylactic reaction to dairy, the first time her lips and throat swelled over, and the first of many terrifying moments for her parents. And Maya is not alone. One in every ten babies in Australia has a severe food allergy, a much higher allergy rate than other countries, and a rate that continues to rise without explanation.

Imagine not being able to kiss your baby without worrying about what you’ve eaten or cuddling them without washing your hands. This is life for many parents of food allergy babies and why at Telethon Kids Institute, our researchers are working to better understand the rise in food allergies in Australia and find ways to prevent them. Ten months on and Maya is a happy, bubbly and thriving little girl who finds joy in every day, especially in music and dancing to R&B.

Find out more about our research into food allergies.

 

Mikayla

Mikayla

11 years old

Down syndrome

Loving, funny, great at telling jokes, a passionate animal lover and a talented drummer, Mikayla brings a world of happiness and joy to her family every day. Mikayla’s family refer to her disability as Up syndrome not Down syndrome because of the enriching and empowering journey it has taken them on, and the friends they have made along the way.

Despite several surgeries in her 11 short years, including open heart surgery at three months old, Mikayla’s positivity shines through. It has inspired her Mum Kylie to become involved in the research at Telethon Kids Institute as a parent advocate for children with Down syndrome. Together with parents like Kylie, our researchers are working to better understand Down syndrome so we can strengthen and build their quality of life and help kids like Mikayla reach their full potential.

Find out more about Mikayla's story and down syndrome research.

 

Nina

Nina

6 years old

Undiagnosed disease

Despite her many surgeries and ongoing therapy, Nina never complains. Instead, she takes everything in her stride. A beautiful, gentle soul, Nina loves listening to her little sister talk and more than anything she loves hearing her sing. Taylor Swift is a household favourite.

Nina came home from hospital a healthy and happy baby, but at 5 weeks she had her first seizure. It was the beginning of a challenging journey for Nina and her family with a myriad of surgeries, hospital visits and procedures; looking for ways to improve Nina’s qulity of life and find answers to unlock her rare disease. Nina’s family refer to her disease as ‘Nina syndrome’ because currently, it remains undiagnosed. It is stories like Nina’s that spur us on at Telethon Kids to do what we do. Not only are our researchers working at the cutting edge of medical research to identify undiagnosed diseases, we are working hard on ways to make sure kids like Nina have the best life they possibly can.

As a result of this research, Nina recently had a feeding tube placed into her stomach to overcome the difficulties she has with swallowing and to make mealtimes easier for the family. Our research has shown a 30 per cent drop in hospitalisations for children like Nina, who have undergone this procedure and a marked difference to mental health and quality of life for these gorgeous kids.

Learn more about our rare diseases research.

Noah

Noah

12 weeks old

Preterm birth

On June 15, at just 25 weeks into the pregnancy, little Noah came into the world weighing 510 grams. And this was almost double the weight doctors were expecting him to be. Noah’s first 12 weeks of life have been a nerve-wracking rollercoaster of small wins and bad turns for his parents, with his underdeveloped little lungs struggling to fight off potential infection.

Wanting to give him the very best chance of survival, Noah’s parents agreed to take part in our preterm research programs at Telethon Kids. Our neonatal researchers are dedicated to identifying new ways to diagnose, prevent and treat infections in preterm babies, giving them the very best possible start in life.

Loving the endless cuddles from his Mum and Dad, Noah is growing stronger and bigger by the day. He may be tiny, but he has the courage of a lion and with a team of experts by his side, he’s free to focus on what kids do best – just being a kid.

Find out how Telethon Kids researchers strive to provide newborn babies with the best possible start in life.

Noah

Noah

2 years old

Speech and developmental delay

At Telethon Kids, we know how important the first 1000 days of a child’s life are. It is the time when the brain begins to grow and develop and when the foundations for lifelong health are established. It is also the time when we, as researchers, have the best possible chance of changing the course of a child’s development for the better. Which is why many of our researchers focus on early intervention, helping kids like Noah to get the best possible start to life.

At seven months old, Noah wasn’t babbling as much as other babies his age. Already part of a research project, Mum Nina mentioned this to the team which quickly led to early assessment and intervention for hypermobility and speech delay. This early diagnosis and support gave them access to specialists and support resources that Nina would otherwise not have been aware of.

Now 2, Noah is hitting important developmental milestones and is on track to start school without the struggle of being behind his classmates. Just like every Mum, nothing is more important to Nina than giving her music-loving, gentle, cuddly boy the very best start she can and thanks to early intervention she will. 

Learn more about our work in early intervention.

Riley

Riley

Passed at 1 month old

Pertussis/Whooping cough

Riley Hughes was just 32 days old when he passed away in his parents’ arms in March, 2015. Perfectly healthy at birth, he developed a slight cough at three weeks of age that deteriorated with shocking speed into the devastating disease, pertussis – also known as whooping cough. Three days after entering hospital, his parents – still convinced he would recover – were told Riley might not make it. Less than 24 hours later, he was gone.

It may not seem possible that such a short life could have such a massive impact, but somehow, Riley Hughes has managed to move mountains. Because of him, his parents Cath and Greg have become tireless champions for research into vaccine-preventable disease. Because of him, governments around Australia have introduced free pertussis boosters for pregnant women in their third trimester – a simple measure which allows newborns to obtain immunity from their mothers. And because of him, countless families have been spared the grief of losing a newborn to an easily avoided disease. It is stories like Riley’s that inspire Telethon Kids Institute researchers to work night and day to reduce the impact of infectious diseases. So kids can be kids.

 Learn more about our infectious dieseases research at Telethon Kids. 

Ruby (and Lennon)

Ruby (and Lennon)

9 years old

ADHD, ODD

Meet Lenny – Ruby’s best friend – and an important member of the Deckert family. During a search for a puppy training program to support children with special needs, Susan Deckert read about the work Telethon Kids researchers are doing to better understand the positive impact pets can have on the socio-emotional and physical wellbeing of young children like Ruby, and decided to enrol.

From a very young age, Ruby displayed difficulties regulating her behaviour and understanding social cues.  From the moment she could walk, she couldn’t sit still, and she struggled to respond to directions. At the age of 2, she was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiance Disorder (ODD). Ruby has a number of sensory issues including a high sensitivity to fabrics, taste and heat. She has difficulty self-regulating and often responds physically instead of verbally when trying to express herself. But some of these struggles have disappeared since Lenny came into her world.

Someone to talk to, to play with and to love unconditionally, Lenny is an empathy and energy outlet for Ruby. Her spirited, mischievous, fun-loving nature is an equal match for his endless bounce and affection. Lenny and his dog friends, just like our researchers at Telethon Kids, are working hard helping kids to be happy, healthy kids.

Learn more about our research in child physical activity, health and development.

Sam

Sam

Passed at 17 years old

Youth mental health

On July 27 2017, just 9 days after his 17th birthday, Sam gave his Mum a hug and went for a shower. Twenty minutes later she found him … and he was gone.

There were no signs.

Sam was an outgoing, funny, happy kid. He had a great group of friends, he loved his sport and being outdoors, and he told the worst jokes ever – but he thought they were great. He loved his family and he was never afraid to show it. Sam was their sunshine.

Sam leaves a spot in the world that will always remain empty. No one will ever know why.

1 in 3 deaths of young people is from suicide. An estimated 41,000 Australian teens attempt suicide each year. Suicide is the leading cause of death for young people in WA and for all of us at Telethon Kids Institute, this just isn’t acceptable.

Our team of youth mental health researchers are racing to gather critical evidence so that we can work with the community to develop the strategies and solutions we need to stop this crisis in its tracks.

Nothing that we can do will ever make sense of the loss Sam’s family feels every day, but for Sam and for all the other young lives lost to suicide, we will find the answers.

Learn more about our research in Youth Mental Health. 

Tahlea

Tahlea

2 years old

Meningococcal disease

Happy, gorgeous and a beautiful big smile – anyone who knows Tahlea will say she lights up a room. Only her parents know how close they came to losing her, after a diagnosis of meningococcal disease at six months of age nearly cost her life. After 162 days in hospital and a further 12 weeks in rehabilitation, Tahlea’s fight against the W strain of the disease left her with amputated fingers and toes, scarring to 80 per cent of her body and a brain injury that means she is unable to talk, walk or swallow on her own.

It’s children like Tahlea – a little life irreversibly changed forever – that have inspired Telethon Kids researchers to spend a decade investigating the safety and effectiveness of the Meningococcal ACWY vaccine. Its successful introduction to the National Immunisation Program in 2018 now sees countless families spared the pain of a heart-breaking meningococcal diagnosis.

Learn more about our vaccine research here.

 

Tenaya

Tenaya

9 years old

Rheumatic heart disease

Tenaya dreams of playing for the Eagles and with her courage, passion, and determination, one day, she probably will. At the age of 5, Tenaya became unwell. Before her mum Katrina could comprehend what was happening, Tenaya was on oxygen and being flown down to Perth to undergo life-saving open-heart surgery not once, but twice. Tenaya has rheumatic heart disease – a life-threatening disease that affects over 5,000 Aboriginal and Torres Strait Islander people in Australia.

There is no cure for RHD but it can be eliminated. At the Telethon Kids Institute, we’ve been working on a plan to do just that. Together with communities, we will end RHD in Australia by 2031, so that unlike Tenaya, kids in the future won’t carry the scars of this preventable disease.

Learn more about END RHD.

 

Toby

Toby

4 years old

Developmental Coordination Disorder (DCD)

Toby is an expert when it comes to bins. And bin trucks. Particularly red bins and red trucks. He might not like them forever but right now, besides books and puzzles, it’s all he wants to know about. A gentle, easy-going four-year-old, Toby has developmental coordination disorder (DCD) – a condition which affects a child’s basic motor skills, hampering their ability to learn and to undertake everyday activities like dressing, writing, jumping and running. Children with the disorder are often assumed to be clumsy and lazy and can suffer bullying, low self-esteem and anxiety.

Before Toby’s legs began to buckle without warning at 20 months, and before the countless paediatric and specialist visits that followed, his parents had never even heard of DCD. That’s because – even though at least one child in every Australian classroom is believed to have the condition – until now it’s gone largely under-recognised and under-supported. Telethon Kids Institute researchers are working hard to change this, recently releasing an Australia-first report on DCD which Toby’s mum, Caroline, describes as life-changing. It’s because of kids like Toby that our researchers will keep working to build the evidence base around DCD – so families don’t feel like they’re doing it alone, so specialists and educators have solid information to help them provide better support … and so kids like Toby can just be kids.

Learn more about our DCD research. 

Tracy

Tracy

35 years old

Fetal Alcohol Spectrum Disorder (FASD)

Tracy is indescribably proud of her happy, smiley little girl, Amy. But she’s also proud of herself, because the fact her daughter is happy, smiley, and 100 per cent healthy is something Tracy knows she’s responsible for.

When pregnant with Amy, Tracy made a conscious decision to completely avoid alcohol. She wishes her own mum had been supported to do the same, because then Tracy wouldn’t have been born with Fetal Alcohol Spectrum Disorder (FASD) – a condition which has left her with lifelong side effects, including intellectual disability.

Tracy’s experience of growing up with FASD not only fuelled her determination to give her own daughter a better start but has seen her join the fight to make others aware of the risks of drinking during pregnancy. Her deepest wish is for all mums to have an alcohol-free pregnancy, so their babies can be smart, happy, smiley and healthy – just like Amy.

It’s stories like Tracy’s that have driven the Telethon Kids Institute’s commitment to make FASD history. Together with communities and partners, we’re building evidence for the prevention, diagnosis and management of FASD so kids can be kids.

Learn more about our FASD research.

These gorgeous portraits were taken by photographer Liz Looker.Photograph of Kim by Steffie Wunderl.

I would like to make a donation to celebrate 30 years of Telethon Kids and help support the ongoing, life-changing research for our children.

We are planning to share a physical exhibition of these beautiful photos and stories with our WA community very soon.
Stay tuned.

Telethon Kids Institute acknowledges Aboriginal and Torres Strait Islander people as the Traditional Custodians of the land and waters of Australia. We also acknowledge the Nyoongar Wadjuk, Yawuru, Kariyarra and Kaurna Elders, their people and their land upon which the Institute is located and seek their wisdom in our work to improve the health and development of all children.