Leo's SASH3 Journey

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Leo's SASH3 Journey

Leo is normally a healthy, happy teenager, except he has an auto immune disorder called SASH3 that is potentially life-limiting.

Follow his journey to race in orienteering and get a stem cell transplant as a potential cure.

26/08/2026

We've been approved!!! USA visas sorted, now we need to nail down the dates with the team in America and book flights.

25/07/2026

Aniseed Ascent 2026 fundraiser for Leo!

Thanks so much to Dougal for organising, everyone who came and competed, and to Tom and his crew with BBQ. So grateful for all the money raised and good race vibes. Special shout out to the event sponsors.

And well done to Leo who ran around the 20km course!

05/07/2026

It's 13 years now since Leo was hospitalized with chicken pox including being on life support in intensive care for a week.

There are apparently three main variations of SASH3 with errors at different points in the genetic code for the protein. Leo shares his with 3 or 4 others diagnosed so far. All of those with Leo's error have had significant responses to common viruses.

A bone marrow transplant provides the only curative treatment currently available for his condition and we're extremely grateful to the team at the NIH for the opportunity.

02/07/2026

Thanks again for the amazing support for Leo last night ❤️

The event raised a whopping $3410 to our cause!

We are so grateful to Nelson Orienteering Club for organising the event, to Orienteering NZ for generously donating back the national event levy to our cause, to Nelson College for the use of the venue, to the amazing volunteers on the night and the wonderful event planners.

But it didn't stop there. With the amazing generosity of those in the club who couldn't make and donated privately, we raised over $4,000.

🥹 thanks everyone ❤️

01/07/2026

Thanks so much to Nelson Orienteering Club for hosting the Full Moon Rogaine Fundraiser. We're so grateful for all the support. Hope you enjoyed the amazing event.

Don't forget about the Aniseed Ascent trail run at the end of the month!

25/05/2026

Excited to announce another fundraising event to support Leo to travel to the USA for treatment! We're getting closer to confirming the trip as we wait for news on scheduling from the team in the USA.

Grampians Full Moon Rogaine - 2-Hours navigating around this iconic inner city park. Pre-entry coming soon.
Wednesday 1 July 2026 between 6 and 8pm

Thanks to Jodie Fa'avae and Jane Lambert for organising! ❤️

Massive thank you to Nelson Orienteering Club for hosting the event and donating proceeds to Leo's cause ❤️

Also, a huge thanks to Orienteering NZ who will be donating the event levy to our fundraiser ❤️

12/05/2026

Woohoo!!!

Very excited to announce the next event linked to our fundraiser for Leo's treatment.

The Aniseed Ascent on 25 July 2026! A 10km or 20km trail run.

A massive thank you to Dougal Shepherd for making our cause the beneficiary of the second running of the Aniseed Ascent. A huge thanks to Tasman Pine Forests Limited for access to private land for the event. https://www.aniseedascent.co.nz/

The second edition of the Aniseed Ascent, is a unique trail race set in the rugged beauty of the Aniseed Valley, just outside Nelson. Starting at the iconic Twin Bridges, this event takes runners deep into the heart of the Tasman Pine Forests estate, where private dirt forestry roads wind their way through a dramatic landscape of pine-clad hills and unique terrain.

Event page for updates and socials:
https://www.facebook.com/events/aniseed-valley/aniseed-ascent-v2/26952923227676999/

Entries:
https://www.aniseedascent.co.nz/entry

27/04/2026

Thanks so much to Jenny Willers, her family and friends for their work and support in putting on the movie night fundraiser for Leo this evening! They raised $409 to support us.

Massive shout out to Mark from State Cinema Motueka for hosting the event. It's greatly appreciated.

As an update on Leo, last Friday was spent as a day patient at Nelson Hospital getting IV immunoglobulin after another immune flare. We're currently waiting to hear from the team in the USA to hopefully schedule the transplant for later this year. Fingers crossed we find out soon!!

22/04/2026

UPDATE: Get your ticket from Motueka State Cinema tomorrow!!!

A massive thanks to Jenny Willers, a Year 13 student at Motueka High School, for organising our next fundraiser for Leo. You can read about this amazing young woman and her adventures here:
https://www.topsouthnow.co.nz/news/6977de992313dd451dc3dee5

Jenny had already organised the event as a fundraiser for her next adventure but after learning about Leo's story reached out to support him instead.

If you have a student at Motueka High School you can shout them out to the movie by buying a ticket at the school library or get a couple for yourself.

31/03/2026

Wow! What an amazing fundraising quiz night.

$2,000 raised after a very generous top up from our hosts at Sprig and Fern Tavern Motueka.

Massive thanks to our hosts and to Maia and Meeka for organising. Thanks too to all the generous donations for the prize raffle.

Look out for another fundraising event soon.

Address

Port Motueka

Website

https://givealittle.co.nz/cause/leo-sash3-bone-marrow-transplant

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