The Chambeyron Family includes Mum Hayley, Dad Jake, Payton (11), Saydee (9), Aubree (8), Arlo and Noah (both 5), and Kash and Knox (both 1).

On an average Wednesday, Hayley was preparing their nursery when she experienced some back pain. She decided to pop into the Maternity Assessment Unit (MAU) for a check and discovered she was in active labour.

Within 10 hours, Kash had descended into the birth canal and needed to come out, so she was taken in for an emergency c-section.

“Kash and Knox were born at Calvary Hospital but were transferred by the NETS team to Canberra Hospital less than 24 hours after birth.

“They were born at 33+6 weeks’ gestation – Knox weighed 2160g, and Kash weighed 1920g,” Hayley shared.

Hayley and her family faced multiple health issues.

Kash spent 28 days in the NICU, and Knox spent 19 days.

“Knox had a true knot in his cord and needed to be resuscitated.

“Kash faced issues with her heart, feeding, and required breathing support, and spent a total of 450 days being NG Tube fed,” Hayley said.

Thankfully, LLTF provided Hayley and her family with a broader community and the opportunity to connect with other families like theirs to share experiences.

“The twins have a long road ahead of them – Kash has a diagnosis of hypotonic cerebral palsy, and Knox faces challenges with over 10 conditions and requires PEG feeds.

“We are extremely lucky to have great family and friend support, as well as an amazing allied health team at Eat Speak Learn, Cerebral Palsy Alliance, and Country Children’s Physio,” Hayley said.

Hayley’s advice to other parents is to embrace resilience.

“No matter how challenging the journey, always hold onto hope and draw strength from the support around you.

“Every small victory is a step forward, and you are never alone.”