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
Donating online is a fast, easy and safe way to donate for donors who would like to pay via credit, PayPal or Apple Pay.
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
I am not a scented candle… Sending loads and loads of love
Sharon & Brian
Sending much love & strength from our family to yours xx
Love from pops Dave fir beautiful boy 💕
Lots of love to you all xxx
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.
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 💛
Pop Dave And Brenda
Such beautiful family, hope this will help amazing olllie who we adore 🥰
“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.
Jani, Rishay And Vijay
Love you Ollie! Keep smiling!
Bizzy, Jimmy And Leo
We love you little man 💕 xx
Ranolf Pharmacy Team
We love you Ollie and hope this little donation will help you xx
My Mr lollie! We love you and your family so much! Love your “La!”
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
All the best to Charlotte, Mark and family.
Ang & Bevan Brake
Such a cool kid, and an awesome family. Love you all.
Just a thank you for your help and support with Ollie so far. Also, I achieved the 5km/day in May - next year I'll do a proper page!