One of the many families who rely on the amazing care and support from Bear Cottage

Teresa and Elias noticed their fifth child Emmanuel was very sleepy and made grunting noises while breathing, but they both put it down to the newborn adjusting to his new surroundings. It wasn’t until Teresa noticed Emmanuel’s head was unusually cold that she called the hospital and a midwife told her to call an ambulance immediately.

Emmanuel was only a couple weeks old when Genetic Specialists at Sydney Children’s Hospital, Randwick diagnosed him with Ornithine Transcarbamylase Deficiency, a rare genetic disorder that causes ammonia to accumulate in the blood.

An MRI also revealed that 80% of Emmanuel’s brain was damaged, leaving it unknown what his future would look like. Emmanuel’s doctors said he was unlikely to survive past two-years-old.

He spent another six weeks at The Children’s Hospital at Westmead, where he underwent intensive treatment and his parents learned how to feed him through a nasal gastric tube.

Emmanuel’s only hope for a ‘cure’ was a liver transplant which he underwent in December 2018.

During Emmanuel’s stay in hospital, the family were recommended to use Bear Cottage for much-need respite.

“I couldn’t wrap my head around going somewhere and having people looking after my son or doing what I do. The first time we went it was nothing like I expected,” said Teresa.

“Now it’s a countdown until our next visit. We have stayed at Bear Cottage five times now”

The family have come to rely on Bear Cottage for their expert support.

“Bear Cottage is a lifesaver. It gives us the peace of mind that Emmanuel is fine. He is well looked after. He is getting the same treatment as home, if not more. We’re just able to take a step back and spend time with each other,” said Teresa.

“Without the place, I don’t know where we could have a break. We couldn’t afford to. There is no other place like it.”

Bear Cottage turns 21 in March! After officially opening in 2001, Bear Cottage has been a lifeline for children with life-limiting illnesses and their families, made possible by the generous support of the community. A home-away-from-home, Bear Cottage is the only children’s hospice in NSW. Offering 24-hour paediatric care in a safe, loving, and compassionate environment.