Kyuss Johnson

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 for research into this childhood dementia.

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 odessy, 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.

You can help

Make an online donation

Donating online is a fast, easy and safe way to donate for donors who would like to pay via credit card or PayPal.

Host a fundraiser

There are lots of ways you can fundraise. We have plenty of ideas for you in our A-Z of fundraising ideas & you can set up your own fundraising page here

Follow Kyuss' FB page here.

A big thank you to our Supporters

The real heroes who are kindly helping us achieve our goal

Nanyi & Hoppa.

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

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

$1,000

Nanyi & Hoppa.

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

$1,000

Nanyi & Hoppa

Much love to our little Tiger 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

Hugs and kisses to the Kyman and all the Sanfilippo kids . 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 & Hopper

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

$1,000

Nanyi & Hoppa

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

$1,000

Nanyi & Hoppa

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

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

$1,000

Nanyi & Hoppa

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

$1,000

Kim & Carol

$105

Nanyi & Hoppa

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

$1,000

Nanyi & Hoppa

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

$1,000

Noah And Ollie

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

$26

Lucy Menzies

$26

Nanyi & Hoppa

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

$1,000

Damian Smith

$263

Anonymous

Blessings for your boy

$53

Nanyi & Hoppa

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

$1,000

No Name

Good luck

$105

Uncle Chris & Aunty Angie

$200

Nanyi & Hoppa

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

$1.05k

Loretta

$30

Nanyi & Hoppa

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

$1,000

Nanyi & Hoppa

Always special hugs & kisses to our KyMan and all the Sanfilippo kids & families !!!!!

$1,000

Nanyi & Hoppa

Big hugs & kisses to our little tiger Kyman … xxxx

$1,000

Anonymous

Praying for you all, best wishes for happy moments and continued efforts :)

$10

Nanyi & Hoppa

Keep those little smiles coming KyMan .they mean the world … always hugs and kisses for you … xxxxc

$1,000

Nanyi & Hoppa

Big hugs and lots of kisses to Kyuss & all the sanfilippo kids and families xxxx.

$1,000

Nanyi & Hoppa

Always big hugs and kisses to Ky & all the Sanfilippo kids & families … xxxx

$1.05k

Nanyi & Hoppa

Big hugs & kisses to our dear Kyuss and all the Sanfilippo kids and families …. xxxx

$1,000

Chloë’s Baby

A Gemmi giraffe gift for a precious baby boy đź’™ Nikki & Kyuss xx

$26

Nanyi & Hoppa

Biggest Hugs & Kisses to Kyuss and all the Sanfilippo Kids & families … xxx

$1,000

Nanyi & Hoppa

Big hugs to Kyuss and all the Sanfilippo kids and families … xxxxx

$1.05k

Janelle Baker

A donation requested by our dad, Steven Baker, for Father’s Day as he cares greatly about this cause.

$63

Nanyi & Hoppa

More hugs and lots of kisses to our KyMan … we miss seeing you during COVID little champ … we love you very much and can't wait to see you soon !!!!!!!

$1,000

Brad Martin

All our love and hope.

$105

Nanyi & Hoppa

More hugs & kisses coming your way KyMan … and all the Sanfilippo kids and families wherever you are …. xxxxxx

$2k

Valley Vicious Auction

$630

Nanyi & Hoppa

Much love, hugs & kisses to our little tiger Kyuss and all of the Sanfilippo kids & families … xxxxx

$3k

Jane Keating

Best wishes Kyuss.

$16

Anonymous

$2

Greg Lacey

Love from Uncle Greg to the Kyman xx

$100

Nanyi & Hoppa

Happy bday Kyuss … with all our love today and always … xxxxxx

$1.05k

Anonymous

Love, hugs and hope xo

$25

Alastair And Nova Robinson

Our love to Kyuss and family. Thinking of all the Sanfilippo children.

$1,000

Annabelle Parker

Sending love and hope xx

$26

Bobby Morse Gill

For Kyuss xx

$105

Beck Goodlet

$105

Christie Black

❤️❤️❤️

$26

Natalie Geddes

$53

Kronk

Sending all my love always

$26

The Gilmore's

Much love and hope always xxx

$25

Melly Martin

Love you guys, thinking of you today đź’•

$105

Natalie Roberts

Dear Nikki and Kyuss, thinking of you two today and your family. I am so sorry that this long word exists as well. Take care and know that I am thinking of you. Love Nat from Uni

$105

Liz Wintle

$53

Stephanie Garay

For Kyuss x

$200

Graeme Johnson

Much love to Ky, Nik & Mike …. and to all the Sanfilippo kids and families wherever you are … xxx

$1.05k

Milli

I'm sorry I have not donated until now. Thinking of you all.

$63

The Ky Cup Fundraiser

$23k

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

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

Future Metals

$1.39k

Nanyi & Hoppa

$1.5k

Nanyi & Hop

$1.66k

Seville Cricket Club (members And Players)

$1.73k

Rotary Club Of Wandin

$1.9k

Rotary Club Of Wandin

$2k

Wilson & Bradley

$2k

Golden Opportunity Shop - Anglican Parish Wandin, Seville & Mt. Evelyn

$2k

Robbie Heritage

$2.5k

Renee Gilmore

$2.55k

Jodie Goodlet/cricket

$2.65k

5 Wishes Birthday Campaign

$3.21k

Nan & Hop

$10k

Kyt Fundraiser

$12.17k

Ladies' Night Fundraiser

$15.26k

Signpoint Australia

$500

Anonymous

$500

Aunty Gwen

$500

Alastair Robinson

$500

Hystress Timber & Trusses

$500