Nine Telethon: Rockhampton boy Hank Death’s battle with cerebral palsy and medication-resistant epilepsy

He had three strokes in the first 18 months of his life but little Queensland fighter Hank Death continues to inspire with his incredible resilience. Read about his harrowing medical journey here.

When Cass and Aaron Death embarked on their 700km mercy dash to the Mater Hospital Brisbane, they were unsure if their baby boy would be alive when they arrived.

Their son Hank suffered a massive stroke within hours of being born at the Mater Rockhampton on October 31, 2018, which left him with a quarter of his brain filled with blood clots.

The brain damage led to seizures and breathing difficulties and he was placed on life support.

Hank was airlifted by the Neonatal Retrieval Service to Brisbane for life-saving treatment.

Neither of his parents could travel in the helicopter with him. Instead, they had to make the agonising journey by road.

“It was awful, especially as a first-time mum,” Cass said.

“He came out and was a little bit blue and by the time I was cleaned up and had done what I needed to do, he was seizing in my husband’s arms.

“Then all the action started to investigate and to get things moving to get us to Brisbane.

“They ended up getting the critical care paramedic and the neo-rescue team from Brisbane.

“There was no room for either of us on the chopper. They loaded Hank up and we had to drive and hope that he got to the other end okay.

“That trip felt so very long.

“We got to the hospital and saw him hooked up to a heap of machines, a whole wall of machines, and he was just lying there lifeless.”

Incredibly, Hank opened his eyes on day five, started breathing on his own on day seven and, by day 14, was transferred back to Rockhampton for his treatment to continue closer to home.

Hank’s initial diagnosis was bleak but the little fighter defied the odds.

“A quarter of his brain completely died off from the stroke,” Cass said.

“Doctors said to us he’d never walk and he’d never talk but we’ve got him walking and talking.

“He had the first stroke at birth and then had another two smaller bleeds, which they obviously class as strokes, one a year later and then one six months after that.”

As a result of the strokes, three-year-old Hank has left-side body damage, cerebral palsy and medication-resistant epilepsy.

“He’s on six different types of medication to try to hold the seizures but it doesn’t last forever so every couple of months he’ll have a big one and we have to tweak the meds again,” Cass said.

“The last three that he has had he’s gone unresponsive and has had to be resuscitated.

“We have a resus kit here that we use to keep his airway open until the ambulance comes.

“Then we normally have about 48 hours in hospital as doctors keep monitoring him.”

Hank also has some feeding issues and has leg braces to help him walk.

He has a weekly regime of speech therapy, occupational therapy, physiotherapy and hydrotherapy.

Cass said while Hank’s health journey had been and would continue to be incredibly challenging, she and Aaron considered themselves very lucky to have their beautiful boy who the family has nicknamed “Hank the Tank” because of his amazing resilience.

“It has made us stronger as parents and made us both much more appreciative of the small things,” she said.

“Hank is just so resilient. He can be critically ill and just days later, he’s back running around the farm.

“He goes through so much but bounces back so quickly.”

The Deaths are also eternally grateful for the incredible medical treatment Hank has received and continues to receive through the Queensland Children’s Hospital.

They are now sharing their story to help other sick children and to encourage locals to donate to the 2022 Nine Telethon in support of the Children’s Hospital Foundation.

Money raised through the telethon funds medical research, life-saving medical equipment and patient and family support services.

Each year, more than 1020 children from Central Queensland are admitted to the Queensland Children’s Hospital.

Cassandra said that despite the ongoing therapy, doctors’ appointments, tests and hospitalisations, Hank did not let anything get in his way.

He is living life to the fullest on the family property outside Rockhampton, and loves motorbikes and tractors.

“Hank is a little champion and, despite everything, he is the cheekiest, kindest and happiest kid around,” she said.

To donate to the Nine Telethon, which airs at 7pm on Saturday, April 23, visit 9telethon.com.au or call 1800 909 900.