August 2025 Lily and Jasper announced they were expecting their third baby. A little boy who would join two big sisters, arriving just months before their parents’ wedding.

This was Lily’s third pregnancy, but her first time carrying a boy. Throughout her third trimester, Lily felt things were different. Her baby wasn’t moving as much as the girls had. She raised these concerns with doctors, who performed scans and reassured her that everything appeared fine.

On the 9th of March, baby Jett was born with thick jet-black hair to match his name. He was quiet and sleepy, but his big sisters adored him from the very first moment, taking turns cuddling and protecting him.

As the weeks passed, Jett remained unusually sleepy and difficult to wake for feeds. Lily again raised concerns with doctors but was reassured that she simply had a very settled baby. When Jett stopped feeding properly and his parents noticed he wasn’t smiling or engaging like other babies his age, Lily took him to the emergency department. Again, they were told it was not a major concern, to continue engaging with him, and to try bottle feeding.

On Friday the 15th of May, Jett was rushed back to hospital struggling to breathe, restless, and refusing feeds completely. In the emergency department, doctors became deeply concerned by Jett’s condition and the rapid eye movements they suspected were seizures. Jett was placed into an induced coma and airlifted to The Children’s Hospital at Westmead.

After days of testing, Lily and Jasper received devastating news. Baby Jett was diagnosed with Aicardi-Goutières syndrome, an extremely rare genetic condition affecting fewer than 1 in 100,000 babies. The disease causes severe inflammation of the brain and nervous system, leading to profound physical and intellectual disability.

Jett has a severe form of the condition, with significant brain damage already evident. Lily and Jasper have been told he is unlikely to ever walk or talk, and his life expectancy is sadly expected to be very limited.

Throughout all of this, Lily and Jasper have remained by Jett’s side while also trying to support and care for their two young daughters through an unimaginable situation. The road ahead is uncertain, and the medical care, therapies, equipment, and ongoing support Jett may require will place enormous emotional and financial strain on the family.

In the months and years ahead, Lily and Jasper will be navigating ongoing hospital appointments, specialist care, therapies, and the reality of providing full-time care for Jett while also raising their two girls. Donations will help relieve some of the financial pressure that comes with time away from work, medical expenses, travel, and future care needs, so the family can focus on spending precious time together.

This page has been created to support Lily, Jasper, Jett, and the girls as they navigate this heartbreaking journey and adjust to a new normal no family ever expects. Any contribution, no matter how small, will help ease financial pressures and allow the family to focus on what matters most, spending precious time together and giving Jett the very best care possible.