About Project William
Project William began with our son.
William Patrick Howard was born on 20 June 2026 in Wagga Wagga. During the pregnancy, every ultrasound came back normal and our standard NIPT came back low-risk. Then, at 33 weeks, testing from an amniocentesis showed he had a 22q11.2 deletion, also known as DiGeorge Syndrome. It was a condition we had never heard of.
William was born with a severe airway obstruction caused by 22q. He never took a breath. We had three precious days with him, and we are so grateful for every one.
We are Teagan and Tom, William’s mum and dad, and big sister Maeve’s parents. Maeve tells us her little brother is in the sky, making the rainbows we see. That’s where our rainbow comes from.
What we're working towardsWe don’t want another family to find out the way we did.
Awareness of expanded prenatal screening. We want every pregnant woman in Australia to know her screening options, so families can make informed decisions and their medical team can be prepared from day one.
Support after a prenatal 22q diagnosis. We want families who receive a diagnosis during pregnancy to find resources and people who understand, from the very first phone call.
Medicare funding for NIPT. Right now, NIPT is paid for out of pocket in Australia. We’re advocating for Medicare to help cover the cost, so access doesn’t depend on what a family can afford.
What we’re doing
We’re sharing William’s story, speaking with medical and industry organisations about screening and funding, and working with media to reach more families. We document our advocacy as it happens, including what’s working, what isn’t and how you can help.
Project William is a family-led project for now. We hope it grows into something bigger, and we’d love for you to come along with us.