At age 12, Tegan was diagnosed with Systemic Scleroderma - a very rare illness that causes hardening and tightening of the skin, joint inflammation, and can affect the heart, kidneys, lungs and oesophagus.
Tegan's condition means she produces a build-up of collagen which causes her skin to thicken.
Mum Danielle said after years of unexplained symptoms which were put down to 'growing pains' - the shock diagnosis left the family shattered. Her son Kyle still struggles to understand why he's perfectly healthy and his little sister is in agony.
"Her diagnosis felt like a nightmare I couldn't wake up from and hearing there was no cure was terrifying. It broke my heart that this was happening to Tegan. If I could take this illness from her, I would." - Mum, Danielle
She still vividly recalls how daunting it was to have several health professionals introduce themselves as Tegan’s medical team and then to learn Tegan needed to begin low-dose chemotherapy injections straight away at Monash Children’s Hospital.
In an instant, every part of the family's life was impacted.
Financially it’s a strain with Danielle and dad David needing time off work to juggle the demands of Tegan's medical treatment.
Tegan has ongoing lung function tests, heart tests, x-rays, CT scans and diagnostic imaging. She takes medication each morning and needs invasive weekly injections which leave her feeling exhausted and nauseous for days. On top of this, every day routine tasks like bathing, going to the bathroom, opening jars and turning door handles cause Tegan immense pain.
Danielle said it’s been hard for Tegan to come to terms with her uncertainty around her illness. There is no research behind the illness, and very few cases in children for Tegan to relate to.
While the family live with this anxiety, they've had moments of happiness in the Starlight Express Room helping them catch their breath to get through the next hurdle.
"I can't imagine hospital without the Starlight Express Room. It takes Tegan's mind of her illness," mum said.
Having fun with Captain Starlight breaks the boredom and brings 'normality' back into her life. Tegan is an outgoing kid who craves expressing herself in the room with arts, craft and appearances on Starlight TV!
Tegan recently started a new drug therapy which involves a large painful injection in her stomach. The procedure was so distressing, her dad had to leave the room while it was being administered.
Fast forward a few months, and Tegan now appreciates her medication is her new norm and a necessary evil.
"Captain Starlight makes Tegan smile and being around them calms her. She loves childhood and isn't in a hurry to grow up so loves bonding with the childlike Captains. We can’t thank Starlight supporters enough."
