At just 24 hours old, Lucas began having seizures which quickly escalated in frequency and severity.
Following various tests including blood tests, an MRI, an EEG and genetic testing, Lucas was diagnosed with KCNQ2 encephalopathy at just nine days old.
KCNQ2 encephalopathy is a rare and severe form of epilepsy that affects the brain and causes developmental delays.
For Lucas, the KCNQ2 encephalopathy has affected his motor and language skills, and he is non-verbal with a severe intellectual impairment.
He has also been diagnosed with eosinophilic oesophagitis due to dairy allergy, and Autism Spectrum Disorder.
Lucas’ mum, Jennie, says the journey and diagnosis turned their family's life upside down.
“We were travelling back and forth to the hospital every day, and he was very unstable,” Jennie said.
“When Lucas came home for the first time at six weeks old, he was on three anti-seizure medications, which thankfully we have managed to reduce to one,” she said.
For Lucas and his family, the Queensland Children’s Hospital feels like a second home.
Lucas requires ongoing support, attending weekly speech therapy and hydrotherapy, and fortnightly occupational therapy and physiotherapy.
The hospital holds special meaning for Lucas’ older brothers too, who have been protective of their little brother from day one.
Recently, his eldest brother, Callum, attended an art session with the prompt to paint somewhere special. Callum chose to paint QCH, as it has played such a significant role in their story and lives.
“While we have spent some of the most unimaginably hard days at QCH with Lucas, we are incredibly grateful that we live in a place with such a fantastic Children's Hospital and we are grateful to all the staff there,” Jennie said.
Lucas is now six years old and is a happy, smiley boy who loves interacting with people. He has been a warrior through all of his challenges and brings joy to those around him.
Jennie says her advice to other families on a similar journey would be to lean on your family and community for love and support.
“Reach out to other parents of kids with complex needs and disabilities as we all go through similar emotions, fears and challenges.
“Ultimately all you can do is love your child, as in the end that is what gets you through the tough days,” Jennie said.