Leo's SASH3 Journey Continues - Stem Cell Transplant

Leo is normally a healthy, happy teenager, who likes pizza, gaming, orienteering and hanging out with his mates. Except he 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 his parents will need to stay in the USA for at least 7 months. There is also the possibility that his brother Riley may need to travel if he is a donor match.

Why the USA? New Zealand doesn't fund this treatment for young adults with Primary Immune Deficiencies.

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