Tegan

Share
This

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.

Tegan in hospital

Open Quote Image
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.
Close Quote Image
Tegan's 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.

Open Quote Image
I can't imagine hospital without the Starlight Express Room. It takes Tegan's mind of her illness.
Close Quote Image
Tegan's mum, Danielle

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

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.

Open Quote Image
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.
Close Quote Image
Tegan's mum, Danielle

Tegan

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
> Make a Donation

Share This

More Starlight Stories

Discover the many ways Starlight and our supporters help light up a sick child’s life

Starlight Kid
Starlight Kid
Amid so much sadness, Starlight has brought the family vital moments of happiness helping them cope with the unrelenting pain of Hunter's treatment.
Starlight Kid
Starlight Kid
Starlight Kid
Winston is known as the 'Little Fighter' in his family.
Starlight Kid

Keep in touch with Starlight

By signing up, I agree to receive news & fundraising information emails from Starlight. Information collected is in accordance with our Privacy Policy