Landen loves dinosaurs and can proudly name them all. He’s fascinated by dinosaur bones and his mum says he carries his dinosaurs with him everywhere he goes – even to hospital.
Sadly, five-year-old Landen has spent a lot of his life in hospital.
Mum Kim said Landen was about one year old when he first got sick.
“Landen stopped eating and we didn’t know why. Our family were really worried. He would only drink liquids and light food, not the usual things we had to eat like damper and chicken.”
At family mealtimes Landen would get up and leave as he didn’t want to even be around food. Kim tried all different types of foods but each time he would leave and go to his room. Landen was unwell on and off for a few years before the diagnosis that shattered the whole family.
Kim remembers the moment vividly – it was just before Landen’s 5th birthday.
“Landen’s Nan called me really worried because Landen’s face and body were puffy and he was crying non-stop,” she said.
Kim said when she saw Landen his body and face were ‘puffed up like a pumpkin’. They went straight to the emergency department and he stayed at the hospital for four days for tests to work out what was wrong.
Doctors diagnosed Landen with a severe chronic illness.
“I nearly collapsed when they told me he was so sick. I cried so much. He was laying in bed hooked up to machines, and drips everywhere. It was so shocking and so sad seeing my child like that.”
The whole family came together to support each other. “My older brother (Landen’s uncle) came with his partner and none of us could handle seeing him like so sick,” Kim said.
Landen stayed in hospital for seven months.
During that time, he was transferred to hospital interstate for a PEG feeding tube to be inserted into his stomach and had countless MRIs, tests and scans.
It was so hard being so far away from family in their remote community in the Northern Territory.
Kim says everything changed since Landen’s diagnosis. “It’s all changed now, including my work because we have to suddenly go to hospital if a PEG tube leaks or becomes red and inflamed. We can’t plan anything.”
The family live seven hours’ drive from Darwin so often need to get the Care flight– which only adds to the stress of every visit to hospital.
Landen has also recently been diagnosed with autism and can be shy around people.
“Hospital makes him anxious; he needs medication in hospital to relax before treatments,” mum said. “Landen has been through a lot for his age.”
Thankfully Captain Starlight and the Starlight Express Room help make hospital less scary.
Landen loves to play dinosaurs with the Captain Starlights and chase around a toy remote-controlled spider in the Starlight Express Room. He also likes playing forts with the Captains and uses his dinosaurs to ‘guard’ the forts!
As well as his heart condition, Landen has had more health issues lately with his pancreas and a blood clot in his tummy.
It helps to know that every time he is in hospital Captain Starlight will be there.
“Starlight makes Landen happy in hospital and he loves playing games in the Starlight Express Room. It helps distract him and keeps him smiling. Thank you to all the people who support Starlight.”
