Family campaigns

Alec Morrice

Alec loves camping. He likes to run but these days is unsteady on his feet. His mum, Michelle, says a smile from Alec makes the hardships of the day disappear.

Callum O'Reilly

We’d spent years investigating Callum’s developmental delays and myriad of medical issues, but when we were told that he was being tested for Sanfilippo, we knew the awful truth before the pathology results were confirmed.

Cody Heslop

On the 29th of October 2010 at 1.10pm we were told of Cody’s diagnosis of Sanfilippo Syndrome A (MPSIIIA). We cried more than I ever thought it was possible to cry. Cody was 9 years old.

Ethan & Ronin Lloyd

Ethan and Ronin are energetic and loving young boys. In 2021 they were both diagnosed with Sanfilippo Syndrome. Coming from families with no known genetic conditions, the diagnoses were particularly shocking.

Isla & Jude Donnell

Isla and Jude adore each other. It is unimaginable one may lose not only their sibling, but also their best friend. Without a treatment, they will not live to adulthood. 

Jacob Chalmers

Jacob is a gorgeous little man. I have never seen a child with a thirst for life like Jacob. He wakes up beaming. He brightens every room he enters with his coy and mischievous smile.

Jane Kohne

Jane loves her little sister Annika and her dog Alli. In fact, "Alli" was her very first word. She loves playing at her grandparents' farm and adores Peppa Pig.

Jobe Koistinen

Jobe continues to fill our hearts with bursting, endless love every day and has his fraternal twin brother, Tate, by his side, protecting him every step.

Jonathan & Laura Smit

Our lives changed in an instant in 2000 with the devastating news that both our children had been diagnosed with Sanfilippo.

Killi Family

Sanfilippo is a devastating diagnosis to receive for families, where they are told to love their child for as long as possible. 

Kye Hardman

Our beautiful boy made his entrance into the world on 1 November 2018. Life was blissful at this point. Kye was born healthy — you know, the ten fingers and ten toes kind of healthy.

Kyuss Johnson

When Kyuss was born five weeks premature, he was born ‘with the caul’, which means the amniotic sac was still intact over his head and face. It is considered quite rare and is meant to be good luck.

Lucas Tiefel

Just before Christmas 2014, Phil and Rohanne Tiefel became the proud parents of two tiny little men – Lucas and Dominic. In 2017, they found themselves in disbelief when one of their twin boys was diagnosed with Sanfilippo Syndrome. 

Marie Arida

To honour Marie, this page has been set up for friends and family to make a donation in Marie's memory, to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions, including Sanfilippo syndrome.

Matilda Page

Matilda's parents learnt her fate when she was just three months old. They are doing everything in their power to stop Sanfilippo before it robs Matilda of every precious milestone.

Meckenzie Oelofsen

Meckenzie is a social butterfly and full of personality and giggles. Her favourite thing to do is meet and greet new people.

Mikayla Campbell

Mikayla was just 13 years old but touched the hearts of absolutely everyone she encountered in her short but very full life.

Noah Bevan

Handsome Noah has lost his battle to Sanfilippo. His parents Julie and Craig and his seven loving siblings will miss him dearly. 

Oliver McCoombes

He’s such an affectionate and active little boy, so being told he won’t be like that forever is one of the worst things a parent can possibly hear. 

Ollie Schimanski

After years of Ollie having seemingly innocuous symptoms, the puzzle was solved, with a terrible diagnosis. We were devastated to be told he has Sanfilippo.

Peter Chalouhy

We got Peter’s diagnosis four days before his fourth birthday, while I was heavily pregnant with our third child Natalie. The impact of Sanfilippo on our family life was tough.

Sam Gauci

In March 2006, we were blessed with a beautiful baby boy, Sam. He was exactly what we thought a little boy would be. He was walking by 11 months and running by his 1st birthday.

Skye Robson

Our story is the same as everyone else’s battling this disease: we walked into that appointment with a slightly delayed child and walked out with one who was terminally ill.

Sukhdev Ram Naipal

I first heard about Sanfilippo Syndrome when I was maybe seven or eight years old, and my parents sat me down and explained to me why my younger brother Sukhdev would not live a normal life.

Thomas Mooney

We heard the words Sanfilippo Syndrome for the first time when Thomas was three years old. While the doctor explained the condition and Thomas’ future I couldn’t believe what I was hearing, as I watched this energetic little boy play with his brothers, Jack and Samuel.

Wayne & Peter

Ann Thompson lost her two boys Wayne and Peter in 1981. In the late 1960s there were few known cases of Sanfilippo Syndrome in Australia and while Wayne and Peter were alive, Ann only met two other families with a child battling this heartbreaking condition.