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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.

Celebrate with Me

Raised

$2,953

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Thank you to my Sponsors

$731.30

St Mary's Catholic Primary School

A Wear Purple for Ollie Day for students, was held for Ollie's campaign to support research for sanfilippo

$525

Bwt Financial Limited

Here's something to get you started x

$215.35

On Behalf Of Amazing Customers And Staff

$105

Gagandeep Kaur

We love you Ollie Lollie. God bless u little boy and we are praying and hoping that there is a cure very soon for this condition and you get better my little friend. Lots of love from Bhavjeet and me 💜💜💜

$105

Enki Hair Spa

$105

Lan

Dearest Ollie, it was so lovely to meet you. You are just like my boy when he was your age, he loves tractors too and I know you also like green boat. Did you know your mum and dad are World most awesome superheroes? Believe me, it is true. Aroha nui Lanny, Ben, Henry and Eleanor

$105

Rach & Brad Schimanski

To support our special little nephew and finding a cure to this devastating disease xxx

$78.75

Kirsty Watt

$60.17

Elstree Kindy

$52.50

Deyna Muller

Such an inspiration xx sending love.

$52.50

Anna Forsyth

You absolute star Ollie xxx

$52.50

Denise Smith

Sending aroha and strength to you all. Hoping and praying for a cure. 💜💜💜

$52.50

Emma

❤️❤️❤️

$52.50

Sonia Campbell

$52.50

Megan Romanes

💕💕💕💕💕

$52.50

John Clark

$50

Helen And Scott

Have a wonderful purple day!

$50

Jeremy Marshall

$50

Anna Bruce

$50

Ant Mcseshie

Im sorry to hear that you are not without woes Ollie. As parents, we want you all to outlive us. Fingers cross that your awareness will bring some positive outcome your way. In the meantime, keep being Ollie.

$50

Des

$31.50

The Neighbourhood

We had a Sausage Sizzle for Sanfilippo.

$26.25

Erin M

$26.25

Peoplehq

$26.25

Kathryn Ross

$26.25

Kelly Bell - Emily Dixons Aunty

Hoping the awareness and research fast tracks, and you get some trials underway. Take care and stay hopeful team. Sending love and light from Emily Dixon’s Aunty. ❤️🙏🏽

$26.25

Nataloe

$26.25

Anonymous

$26.25

Andrea Airs

$26.25

Anonymous

$26.25

Emily Dixon

You and you family are so amazing and kind Ollie! Love that you enjoy school and life 💜💜💜💜

$26.25

Carmel Clarkin

For you guys and your beautiful Ollie. Sending all my love and hugs to you Char 😘 xxx

$10.50

Anonymous