Leo's SASH3 Journey

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.

26/03/2026

Frustrating how those who face the unknown can get health insurance easily in NZ, while those who have known conditions often can't get cover. Even harder when our health care system waits until patients have chronic poor health before intervention.

Thankfully, we have the amazing opportunity to travel to the USA for treatment and your support is greatly appreciated 👏 ❤️

Moves to locally conduct genomic testing has caused concern about what it means for insurance premiums and eligibility.

15/03/2026

***UPDATED Start Time***

First of our fundraising events!

Quiz Night
Sprig + Fern Tavern Motueka
Be there by 6:30pm
Starts at 7:00pm Tuesday 31 March 2026
Book a table to guarantee a spot

Massive thanks to Maia Campbell and Meeka Inglis for organising and to Sprig and Fern Tavern Motueka for hosting.

Please come along to support us fund Leo's trip to the USA for specialist treatment and a bone marrow transplant.

Can't make it? Donate here:
https://givealittle.co.nz/cause/leo-sash3-bone-marrow-transplant

08/03/2026

On one hand, it's exciting to be sending a saliva sample to the USA to see if Riley is a bone marrow match for Leo.

On the other, it's frustrating that this won't be done in New Zealand. Funding for proactive treatments for those with rare disorders should be prioritized here in NZ as it reduces the considerable cost to the individual and country of delaying treatment until the person's condition becomes chronic.

28/02/2026

Today is World Rare Disease Day. It coincides with the last day February and in NZ it marks the start of Rare Disorders Month.

Leo is one of only 14 people in the whole world who have been diagnosed with SASH3.

Unfortunately, he's spent the day in isolation with Covid, but he seems to be bouncing back.

The photos from a hospital visit last year.

19/02/2026

Last year, Leo represented New Zealand at three different international orienteering competitions.

During that time, he has also been hospitalised three times. Each time needing blood products and steroids to limit the long-term effects of his disorder and speed his recovery. His determination to train and compete with on-going health issues has been inspirational to his family.

We'd like to recognise the support of Network Tasman Trust and Nelson Orienteering Club for Leo to compete at the Australian Schools Champs and the European Youth Champs in 2025. Unfortunately, for both competitions, Leo experienced an immune flare prior to competing which limited his ability to perform to his potential.

This year, Leo is striving to be selected to represent New Zealand at the Junior World Orienteering Champs. It's an ambitious goal considering his setbacks.

However, he's recently been prescribed immunosuppressants and is regularly monitoring his health while progressively increasing his training load. It's a challenging goal, especially while balancing the need for the longer term health intervention of a stem cell transplant.

Thank you all for your support for Leo.

15/02/2026

Four years ago, Leo's SASH3 journey took a major turn.

Leo was admitted to hospital with a new condition called Cold Autoimmune Hemolytic Anemia. His immune system attacked his red blood cells and he needed hospitalization in Christchurch. After ten units of blood, his immune system finally started to settle down .

From the age of 7 to 14 we had been discharged from the hospital system and had been managing Leo's ITP flares at home without intervention. During this time, he was what's known as a swan, syndrome without a name.

After his case of CAHA, immunology retested his exome and later that year he tested positive for a newly discovered disorder called SASH3. At that stage, there were less than 10 people worldwide with the condition. Now there's a grand total 14.

Thanks to everyone who has donated so far! We have some cool fundraising events being lined up over the next few months and your support is greatly appreciated.

10/02/2026

Leo's Dad, Michael donating blood today.

Leo has needed many transfusions over his life, including whole blood, platelets, plasma, immunoglobulin. When he has an immune flare and he starts to destroy parts of his own blood, blood products help him through the flare until his system resets itself.

Please consider donating blood, please support him to get a transplant in the US and please share Leo's story.