The hours after birth are often full of excitement, joy and celebration. But for Jess and her family, it was filled with fear and stress after her son, Jasper, was taken into special care. The very next day, Jasper was rushed to the RCH and diagnosed with a condition close to Jess’ heart – Pierre Robin Sequence (PRS).

PRS is a rare congenital birth defect where babies are born with a small lower jaw, and often a cleft of the palate, making it difficult to breathe and feed.

“The diagnosis itself was scary for us because I have an extended family member whose child was born with PRS. They passed away a few years ago, and were very, very young. So, when they said PRS, I thought, in the worst-case scenario, we are not going to have our son around for more than a year. It was terrifying,” Jess shared.

However, after two and a half weeks of wondering what this diagnosis meant for the family, they were finally told that Jasper’s PRS was non-syndromic, meaning that it didn’t have any other illnesses attached to it. Jasper could then begin receiving the treatment he needed to fix his jaw and cleft palate so he could breathe and eat with ease.

“He had his very first surgery when he was four weeks old
– a jaw distraction. As far as we know, the RCH is the only hospital in Australia that can perform this procedure. He was kept in an induced coma for just under a week and eventually, at about seven weeks old, we were able to go home, explained Jess.

Throughout their journey, Jess has been incredibly grateful for the outstanding care the RCH’s nursing team has provided, and their dedication to patients.

“The nurses are just the most phenomenal people I have ever met. Obviously, their first job is to care for the babies, but they do so much for us [the families] as well. They were like our second family,” Jess expressed.

The reality of the care the hospital could offer became especially apparent to Jess after she connected with families in similar situations across the globe, one of whom even lost their house after providing their child with the life-saving care they needed. It was after that that Jess decided to leave a Gift in her Will to the RCH Foundation.

“To know you can have your child’s life saved without having to lose your home or anything is something really important for us to pay forward. So, my husband and I have both put in our Wills a Gift to the RCH Foundation,” Jess shared.

Jess also has a message to everyone considering leaving a Gift in their Will.

“It doesn’t have to be, you know, 85 per cent of your wealth, it can be something small, because even a little bit counts, and it also brings awareness to others who may not have considered it. I think a lot of people think unless they’re doing something really massive, it’s not worth it, but it absolutely is,” Jess said.

Jess found the process incredibly easy as well.

“It was literally just saying to the lawyer, ‘yes, we’d like to leave a Gift.’ They noted it and it was that easy,” she added.

Jasper is now five years old and recently underwent surgery number seven. With each procedure, he is one step closer towards a future without hospital appointments and visits, something Jess is incredibly grateful for.

She also hopes that her Gift will improve the lives of other kids like Jasper.

“There are going to be a lot of families that will come after us who are going to need the services there – and we will do anything we can do to help pay that care forward,” Jess said.