Family campaigns
Explore inspiring family campaigns sharing the unique stories and urgent needs of children with childhood dementia.
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.
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, the devastating disease that claimed this much-loved young lady's life.
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.
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. Oliver’s laugh and smile are infectious, and he’s always talking to everyone when we go out.
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.
