Family campaigns

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. 

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 – their little ‘blonde bombshell’ – Lucas, 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.

Mikayla Campbell

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

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.

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.

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.