Jacob & Riley's Story

Two sick siblings, one big hospital family

When a Sydney family’s world was torn apart twice, they were enfolded by a caring and expert multi-disciplinary team that stretched right across the city – and it made all the difference.

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To have one child born with a severe, long term illness, then another diagnosed with a life-threatening condition is unimaginable for most parents – but it’s a reality for Brooke and Travis.

When Jacob was born, his first-time parents doted over their new baby boy and celebrated every milestone- his first stare, his first smile and then his first giggle. But six months in, they noticed Jacob’s arm and leg muscles would often go stiff and his head would bend forward strangely.

After countless tests, doctors broke the unexpected news that Jacob had a rare disorder called infantile spasms, a severe form of epilepsy that is very hard to control and can cause intellectual disabilities.

“At first, I was a bit naïve and thought Jacob would just need medication to make the seizures stop. But overnight, our world turned upside down and our roller-coaster journey began,”   


Brooke
Mum

By the time Jacob was 20 months old, the Neurology team at The Children’s Hospital at Westmead had explored many different treatment options including removing a small section of his brain, but unfortunately, nothing stopped his seizures.

It wasn’t until Jacob was three-and-a-half years old that he received his definitive diagnosis: Lennox–Gastaut syndrome – an extremely rare form of epilepsy with no known cure. Since then, he continues to endure hundreds of seizures each and every day. This has caused Jacob permanent brain damage.

“Caring 24/7 for a non-verbal child with a severe intellectual disability is hard, but you learn to appreciate the little things they do to show their love and affection,” says Brooke. “We are so lucky to have such a loving, placid young boy who charms everyone with his famous cuddles.”

Three years later, Brooke and Travis welcomed a beautiful healthy little girl, Riley. At that moment, the family could never have imagined just two-and-a-half years later, they would need to rely on another team at Sydney Children’s Hospital, Randwick.

It was when Riley developed two urinary tract infections, that a routine ultrasound unveiled the start of another scary chapter – a rare kidney cancer.

“I still remember us in a room, watching Peppa Pig and slowly dozing off in the chair when the doctor came in and shared the news. I honestly thought he had made a mistake. I thought to myself, it can’t be Riley,” shares Brooke.

A couple of days after the diagnosis, Riley had to have life-saving surgery to remove her affected kidney and soon after started chemotherapy. Treatment was tough. It left her feeling sick and tired, causing appetite and hair loss, and resulting in many admissions to hospital for fevers. Being the resilient girl she was, she always got through it with a smile on her face, despite the difficult side effects from treatment.

The strong family of four found themselves in a very unique position, one that many families are fortunate to never find themselves in. They had one sick child receiving long-term care at The Children’s Hospital at Westmead, and the other undergoing early-stage cancer treatment at Sydney Children’s Hospital, Randwick.

“Both of my perfect, healthy-born kids missed precious moments in their childhood that they’ll never get back. Instead of spending their days at preschool, school or playing in the local park with their friends, they were undergoing tests and treatment.”

But I will always be grateful to the staff at both hospitals who were our source of light and hope, during our darkest days. It’s thanks to the doctors, nurses, specialists, ward staff, music therapists and volunteers that we’ve managed to stay positive throughout this journey.”

With Riley, 5, now in remission, and Jacob, 8, loving attending school, life has stablised although hospital visits are still a routine part of their lives. Brooke says they have “struck the lottery at Westmead and Randwick”.

Brooke and Travis both know what it takes to ensure every child gets access to this remarkable care. Today, they’re sharing their story to help encourage everyone to donate to the Sydney Sick Kids Appeal.

“It's hard to comprehend a situation like ours, it's pretty extreme,” Brooke says. “But if you found yourself in our position, you would want the best care for your child, and the only way to do that is access to the best equipment, care and patient experience,” said Brooke.

“Your donations keep things moving forward and give kids like mine a chance. Your support today will make a family’s hospital experience tomorrow that little bit brighter.”

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Sydney Children's Hospitals Foundation raises funds for Sydney Children's Hospital, Randwick , The Children's Hospital at Westmead, Bear Cottage, the Newborn and Paediatric Emergency Transport Service (NETS NSW) and Kids Research