Hope For Kyuss
Your support can make a difference for all kids with dementia
Kyuss Johnson
Kyuss has Sanfilippo Syndrome. Without treatment, he will not live to adulthood. You can help children like Kyuss by contributing to our campaign to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions.
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.
After a long diagnostic odyssey, on January 6th, 2015 we were confronted with the shocking news that Kyuss had MPSIII Type A, also known as Sanfilippo Syndrome. My heart shattered into a million tiny pieces. I never knew conditions like these even existed. I couldn’t look at Kyuss because it hurt to think I might lose him. I was scared to love him.
I had to be strong for my little man. I still had a gorgeous, happy boy in front of me, and a girlfriend once said, “Tomorrow is not guaranteed to any of us”. This resonated with me and I found the strength to soldier on. Kyuss loves his pet dog 'Hope' and visiting his grandparents farm. Kyuss no longer talks but still charms everyone he meets. His family live in hope. All they want is for Kyuss to live beyond his current life expectancy.
When something like this happens, you certainly see the world differently. You appreciate so much more and the little things seem so trivial now. I hope that with the work of the Sanfilippo Children’s Foundation, the wider community, family and friends, my son, Kyuss, will receive treatment and get the chance at life that he deserves.
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.
After a long diagnostic odyssey, on January 6th, 2015 we were confronted with the shocking news that Kyuss had MPSIII Type A, also known as Sanfilippo Syndrome. My heart shattered into a million tiny pieces. I never knew conditions like these even existed. I couldn’t look at Kyuss because it hurt to think I might lose him. I was scared to love him.
I had to be strong for my little man. I still had a gorgeous, happy boy in front of me, and a girlfriend once said, “Tomorrow is not guaranteed to any of us”. This resonated with me and I found the strength to soldier on. Kyuss loves his pet dog 'Hope' and visiting his grandparents farm. Kyuss no longer talks but still charms everyone he meets. His family live in hope. All they want is for Kyuss to live beyond his current life expectancy.
When something like this happens, you certainly see the world differently. You appreciate so much more and the little things seem so trivial now. I hope that with the work of the Sanfilippo Children’s Foundation, the wider community, family and friends, my son, Kyuss, will receive treatment and get the chance at life that he deserves.
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You can help
Donate today
It's a simple way to show your support for Kyuss and all kids with dementia. Donations are secure and tax deductible in Australia.
Fundraising ideas to support Kyuss
Sign up for an existing event or create your own fundraising activity to show your support. From morning teas to multi-day adventures, the options are endless.
Trek of a lifetime
Sign up for our bucket-list trekking adventure along the Inca Trail to Machu Picchu in 2025, and fundraise for kids with dementia.
Run for free
Run a half-marathon, marathon, or an ultra, fundraise for kids with dementia, and if you hit your target we'll reimburse your entry fee.
Choose your own
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