Hope For Kyuss
Your support can make a difference for all kids with dementia
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.
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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A big thank you to our supporters
Nanyi & Hoppa
Loretta
Nanyi & Hoppa
Bunches & bunches of hugs & kisses to Kyuss and all the Sanfilippo kids and families.
Uncle Chris & Aunty Angie
No Name
Good luck
Nanyi & Hoppa
Thursday hugs & kisses to the KyMan and all the Sanfilippo kids and families ... xxxx
Blessings for your boy
Damian Smith
Nanyi & Hoppa
Best wishes to all the Sanfilippo kids and their families wherever you are .... xxxx
Lucy Menzies
Noah and Ollie
Happy birthday Kyuss(for tomorrow), wishing you a special day, full of hope and love xxx
Nanyi & Hoppa
Special birthday wishes for a special boy ... Happy bday KyMan ... we love you ... xxxx
Nanyi & Hoppa
Best wishes to all the Sanfilippo kids & families ... special hugs & kisses to the KyMan ... xxxx
Kim & Carol
Nanyi & Hoppa
Biggest hugs and kisses to the KyMan and all the Sanfilippo kids and families ... xxxx
Nanyi & Hoppa
Best wishes to all the Sanfilippo kids and their families ... biggest hugs & kisses ever to our Kyman ... we love you ... xxxx
The Gilmore's
Merry Christmas Ky man and family, our Christmas wish is a cure for you and the sanfilippo family. Xx
Nanyi & Hoppa
Much love to Kyuss and all the Sanfilippo kids and families ... xxxx
Nanyi & Hoppa
Big hugs to the KyMan and all the Sanfilippo kids and their families .... xxxx
Nanyi & Hopper
Hugs and kisses to our special little monkey ... we love you KyMan ... xxxx
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
Nanyi & Hoppa
Hugs and kisses to the Kyman and all the Sanfilippo kids . xxxx
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
Nanyi & Hoppa
Much love to our little Tiger and all the Sanfilippo kids ... xxxx.
Nanyi & Hoppa.
BIG hugs and kisses to the KyMan ... we love you !!!!!!!!!!!!!!!!
Nanyi & Hoppa.
Much love and hugs and kisses to our KyMan and all the Sanfilippo kids and families ... xxxx
Nanyi & Hoppa.
Much love and best wishes to all the Sanfilippo kids & families ... big hugs & kisses to our Kyman xxxx.
Nanyi & Hoppa.
Big hugs to the Kyman and all the Sanfilippo kids & families ... xxxx
Nanyi & Hoppa.
HNY to Kyuss and all the Sanfilippo kids and families !!!!!!
Nanyi & Hoppa.
Best wishes to all the Sanfilippo kids & families xxxx
Nanyi & Hoppa
BIG bday wishes coming up for our KyMan ... 13yo ... super hugs for our little champ ... we love you !!!!!!!!!!
Big hugs & kisses to our little champ the Kyman and all the Sanfilippo kids and their families ... xxxx