Leo's SASH3 Journey

26/01/2026

Today marks fifteen years since Leo's first immune system flare at the age of 3.

He was on the trampoline with a friend and their heads collided. Over the next day or two he developed a golf ball sized bruise on his forehead which kept spreading until his eyes were but slits to see through. He developed micro-bruises all over his body and started bruising elsewhere.

We took him to the hospital where they gave him a transfusion of blood platelets and sent on the next flight to Christchurch with Sally where he was admitted to oncology as a possible leukemia patient. After more testing they gave him intravenous immunoglobulin. If he had leukemia then his body wouldn't respond to the treatment.

Thankfully, after a very stressful week, he responded to the medication and his immune system stopped attacking himself. We were told that he'd had a bout of acute ITP (Immune Thrombocytopenia Purpurea).

We were sent home and told not to worry about it, as it would never happen again. Here we are after 15 years and about 40 cases of acute ITP later.

Here are some images of what ITP does to the body, including bruises and petechiae. What's hidden is the fatigue, the risk of intercranial bleeding and the long term incremental damage to internal organs.

Thanks everyone who has supported us so far. Lot of love to you all.

25/01/2026

Today we launch Leo's fundraising for him to get a life changing stem cell/bone marrow transplant in the USA.

Leo has an auto immune disorder called SASH3 which is a protein in your body that signals how the immune system is supposed to work. For Leo, each time he gets sick, injured or too stressed, his immune system can attack his own blood and he can be hospitalised requiring significant intervention with intravenous blood products, antivirals and steroids. He's recently started immunosuppressants to help modulate his immune system.

After his baseline testing in May 2024 at the National Institute of Health in Washington DC, USA, his specialist advised that a "Bone marrow transplant should be also kept among the treatment of choice given it is the only possible definitive therapy" (July 2024). Subsequently we have been told that two of the 14 known patients with SASH3 in the world have now passed away from infections, so the need for the transplant is now imperative.

Please help us fund this trip. The treatment is free but the travel, accommodation and associated costs aren't covered. Leo and a support person will need to stay in the USA for at least 7 months.

The most likely dates for this, are either the second half of 2026 or 2027.

Leo needs a bone marrow / stem cell transplant in the USA to live a normal, full adult life with his immune deficiency SASH3