16 September 2020 News

Lyla’s story

The Connected Care Program is just one of the many services supported by the Woolworths and Children’s Hospital Foundation partnership.

On behalf of thousands of sick kids and their families across the state, the Children’s Hospital Foundation is thanking Woolworths teams and their customers for working hand in hand to raise more than $60 million over 34 years to positively shift health outcomes for Queensland’s sickest kids.

The generosity of Woolworths customers and team has helped fund ground-breaking medical research, life-saving equipment, including the development of a rapid diagnostic test for meningococcal, bedside entertainment at Queensland Children’s Hospital, innovative research into childhood nutrition and support of the Connected Care program – a state-wide program that streamlines specialist services for kids with the most complex conditions, just like Lyla Van Jole.

Family life was turned upside down for the Van Jole’s, when their five-year-old daughter, Lyla, was diagnosed with a Peroxisomal Biogenesis Disorder which is a rare inherited metabolic condition.

Her diagnosis came about after Lyla fell ill with a virus when she was four months old.  She was admitted to hospital for observation, soon after the doctors discovered that her liver was enlarged for her age.

Two days later, parents Bec and Kieran received a phone call asking them to come back in and see the doctors as soon as possible.

“I remember asking what was wrong, and they just told me to bring someone with me to the hospital, so my husband and I rushed there, where we were told that they thought Lyla had a rare disease – the conversation became a blur after that,” Bec said.

“We were told that Lyla would only survive for two to three years, and our hearts were breaking. We tried to stay positive, but blood test results arrived a week later that confirmed the diagnosis – Lyla was terminal, and we couldn’t change a thing.”

Lyla’s condition presents in many ways, and her medical journey is always growing as she fights eye disease, liver disease, coagulopathy anaemia, adrenal insufficiency – the list gets longer every year.

There hasn’t been a year in which Lyla hasn’t had surgery, but Lyla is a fighter, and has started walking this year, at five years old.

For the Sunshine Coast family, Children’s Health Queensland’s Connected Care Program has helped them navigate the system, which is designed specifically to support families of children with the most complex and severe medical needs.

Not all of Lyla’s treatments can be done on the Sunshine Coast, so Connected Care offers support for families who have to visit specialists at Queensland Children’s Hospital in Brisbane, ensuring that all appointments are streamlined, minimising the impact on the child and their family.

“Lyla is too complex to go to any other hospital in Queensland for procedures, so she’s currently a Queensland Children’s Hospital patient under metabolic, endocrinology, ENT, hepatology, ophthalmology, allergy clinic, allied health, haematology and gastroenterology,” Bec said.

“Travelling to Brisbane to keep up with the gruelling medical schedule can be stressful, and Connected Care is a friendly support service that helps us find accommodation and support workers, and helps us get through every appointment, every phone call, and every treatment more easily.”

The Connected Care Program is just one of the many services supported by the Woolworths and Children’s Hospital Foundation partnership for Queensland kids and their families.

Children’s Hospital Foundation CEO, Rosie Simpson, could not be more grateful for the support that Woolworths teams and their customers have shown, showcasing that famous Queensland community spirit.

“When visiting my local store, I love seeing the Woolworths team’s enthusiasm at collecting donations, and of course, the incredible customers who give so generously and lovingly to help our cause, and for that, I say thank you to the Woolworths community and customers for all your support,” Ms Simpson said.

“Celebrating the incredible milestone of $60m raised gives us a chance for us to say thank you, and formally recognise that we simply couldn’t do what we do for sick children without the generosity of the Woolworths team and their customers.”

Chris Peters, Woolworths General Manager Queensland, said this donation would not have been possible without their amazing community of team members and customers.

“60 million dollars is an absolutely huge sum to have raised, and we’re very proud of the effort that our teams and customers have put in,” Mr Peters said.

“We feel so privileged to have such an incredible base of team members and customers in both Queensland and across the country, who are so willing to help a cause close to all of our hearts, and it’s incredible to see the impact that their determination and empathy has had on hundreds and thousands of sick kids and their families.”

 

60 million reasons to say thank you, Lyla is just one of them.