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
A big thank you to our Supporters
The real heroes who are kindly helping us achieve our goal
Nanyi & Hoppa
$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 💙 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 💕
$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
Dad
$500
Footy Auction
$502
Mikes Memorabilia
$570
Michael Johnson
$580
Much love to our little Tiger and all the Sanfilippo kids ... xxxx.