Ollie

By Ollie Schimanski

Our little monkey

In late Jan after years of Ollie having seemingly innocuous symptoms (reflux, hearing loss, speech delay, tonsil/adenoid issues), the puzzle was solved, with a terrible diagnosis. We were devastated to be told he has Sanfilippo.

Cue a crash course in something we didn’t know existed, let alone something we are both carriers of; Sanfilippo is autosomal recessive. 

Sanfilippo is a fatal, rapidly degenerative, metabolic disorder, sometimes known as childhood dementia. And there is currently, no treatment or cure. 

Thankfully it is very rare, and Ollie is one of (maybe) 3 kids in NZ who suffers from the syndrome. And it’s not all doom and gloom - Ollie is still the same amazing little monkey, we just understand him better and he continues to blow us away with his pure joy for life. He adores his big sister (who is not affected) and loves tractors, motorbikes, mountain biking and “hammer nailing”. 

We are hoping for a clinical trial, but at this moment, there are none for Ollie’s subtype. And while we wait, we want to raise money for The Sanfilippo Children’s Foundation which has been set up to drive research into this disease. We, along with many others, hope for a world without Sanfilippo Syndrome.

Thank you to my Sponsors

$315

Ranolf Pharmacy Team

We love you Ollie and hope this little donation will help you xx

$157.50

Sian, Nick, Cami, Maya, Leo, Freida

The coolest wee man around - sending all the love and tractor and motorbike hugs, and some hammer-nailing hi fives 💛

$105

Sarah Ziessen

$105

Rachel Mcrae

$105

Ang & Bevan Brake

Such a cool kid, and an awesome family. Love you all.

$105

Steph Wakeman

$105

Kathryn Ross

So sorry to hear about Ollie's diagnosis. He is such a sweet boy - he often helps me put Jake's bag in his cubby hole when we drop him off in the morning. A clinical trial would be brilliant x

$105

Bizzy, Jimmy And Leo

We love you little man 💕 xx

$105

Libby

I am not a scented candle… Sending loads and loads of love

$100

Jani, Rishay And Vijay

Love you Ollie! Keep smiling!

$100

Baker Family

Lots of love to you all xxx

$78.75

Ella (la)

My Mr lollie! We love you and your family so much! Love your “La!”

$52.50

Margaret Mcmillan

$52.50

Anonymous

“Lollie!” Harper says. “Batman and Paw Patrol,” Lew-lis says. “Meet you in the cul de sac?” we say. You’re good neighbours and great friends! Much love from our family to yours.

$52.50

Pop Dave And Brenda

Such beautiful family, hope this will help amazing olllie who we adore 🥰

$52.50

Emma Salis

❤️❤️❤️

$52.50

Sharlene Robinson

$52.50

Sophi Irene And Iris

Oh no, I wish Ollie can have a clinical trial. You are such a helpful child. Sending love to the beautiful family.

$52.50

Dave Menefy

Love from pops Dave fir beautiful boy 💕

$52.50

Sharon & Brian

Sending much love & strength from our family to yours xx

$26.25

Anonymous

All the best to Charlotte, Mark and family.

$26.25

Anonymous