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.
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$218,193

Raised of $250,000 goal

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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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A big thank you to our supporters

Nanyi & Hoppa

Big hugs & kisses to our little champ the Kyman and all the Sanfilippo kids and their families ... xxxx

$1,000

Loretta

$30

Nanyi & Hoppa

Bunches & bunches of hugs & kisses to Kyuss and all the Sanfilippo kids and families.

$1.05k

Uncle Chris & Aunty Angie

$200

No Name

Good luck

$105

Nanyi & Hoppa

Thursday hugs & kisses to the KyMan and all the Sanfilippo kids and families ... xxxx

$1,000

Blessings for your boy

$53

Damian Smith

$263

Nanyi & Hoppa

Best wishes to all the Sanfilippo kids and their families wherever you are .... xxxx

$1,000

Lucy Menzies

$26

Noah and Ollie

Happy birthday Kyuss(for tomorrow), wishing you a special day, full of hope and love xxx

$26

Nanyi & Hoppa

Special birthday wishes for a special boy ... Happy bday KyMan ... we love you ... xxxx

$1,000

Nanyi & Hoppa

Best wishes to all the Sanfilippo kids & families ... special hugs & kisses to the KyMan ... xxxx

$1,000

Kim & Carol

$105

Nanyi & Hoppa

Biggest hugs and kisses to the KyMan and all the Sanfilippo kids and families ... xxxx

$1,000

Nanyi & Hoppa

Best wishes to all the Sanfilippo kids and their families ... biggest hugs & kisses ever to our Kyman ... we love you ... xxxx

$1,000

The Gilmore's

Merry Christmas Ky man and family, our Christmas wish is a cure for you and the sanfilippo family. Xx

$25

Nanyi & Hoppa

Much love to Kyuss and all the Sanfilippo kids and families ... xxxx

$1,000

Nanyi & Hoppa

Big hugs to the KyMan and all the Sanfilippo kids and their families .... xxxx

$1,000

Nanyi & Hopper

Hugs and kisses to our special little monkey ... we love you KyMan ... xxxx

$1,000

The Gilmore's

Thinking of you always and with the magic of Christmas around the corner we always wish for a cure for Ky man. Love yas xxx

$25

Nanyi & Hoppa

Hugs and kisses to the Kyman and all the Sanfilippo kids . xxxx

$1,000

Craig Holdsworth

Kyuss & Dad (Michael), and grand parents..... A beautiful journey that will hopefully continue to keep giving in years to come......bring on the loud noises Kyuss!!! Warm regards Craig H

$53

Nanyi & Hoppa

Much love to our little Tiger and all the Sanfilippo kids ... xxxx.

$1,000

Nanyi & Hoppa.

BIG hugs and kisses to the KyMan ... we love you !!!!!!!!!!!!!!!!

$1,000

Nanyi & Hoppa.

Much love and hugs and kisses to our KyMan and all the Sanfilippo kids and families ... xxxx

$1,000

Nanyi & Hoppa.

Much love and best wishes to all the Sanfilippo kids & families ... big hugs & kisses to our Kyman xxxx.

$1,000

Nanyi & Hoppa.

Big hugs to the Kyman and all the Sanfilippo kids & families ... xxxx

$1,000

Nanyi & Hoppa.

HNY to Kyuss and all the Sanfilippo kids and families !!!!!!

$1,000

Nanyi & Hoppa.

Best wishes to all the Sanfilippo kids & families xxxx

$1,000

Nanyi & Hoppa

BIG bday wishes coming up for our KyMan ... 13yo ... super hugs for our little champ ... we love you !!!!!!!!!!

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

Nanyi & Hoppa

$1,000

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