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.
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.
You can help
Make an online donation
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Host a fundraiser
A big thank you to our Supporters
The real heroes who are kindly helping us achieve our goal
St Mary's Catholic Primary School
On Behalf Of Amazing Customers And Staff
Sharon & Brian
Sophi Irene And Iris
Sian, Nick, Cami, Maya, Leo, Freida
Pop Dave And Brenda
Jani, Rishay And Vijay
Bizzy, Jimmy And Leo
Ranolf Pharmacy Team
Ang & Bevan Brake