By Jessica Anstice
A 12-year-old Pakenham girl suffering from a rare autoimmune disease that causes her skin to harden has revealed what it is like living with a serious illness through the coronavirus pandemic.
Tegan Pye was diagnosed with systemic scleroderma in August last year – a day after her grandmother’s birthday.
After years of unexplained symptoms, her mother, Daniele Ashley-Pye, put it down to ‘growing pains’ – the family was shattered to learn about the diagnosis.
The chronic illness can affect the body’s vital organs, joints and skin, causing Tegan to often feel uncomfortable.
While hospitals can be daunting at the best of times, the coronavirus outbreak has Tegan feeling “a little bit scared”.
“My immune system is being suppressed so I’m more likely to catch Covid-19,” she said.
“I’m also feeling bored and missing my friends a lot. I started online school on Wednesday and it’s going OK, I’m adjusting well.”
Ms Ashley-Pye said the coronavirus pandemic also has her feeling anxious and wary around the health and safety of her daughter.
“I don’t want her out and about because she’s more prone to catching this due to her lowered immune system,” she said.
“We worry a lot as parents because we want to protect her as much as we can.
“We keep gloves, masks and hand sanitiser by the door if Tegan does need to pop outside.”
The Starlight Foundation’s Express Room at the Monash Children’s Hospital has been a somewhat of a saviour for the young girl going through a tough time.
Throughout her treatment, which involves low-dose chemotherapy injections, ongoing tests on her organs, CT scans, x-rays and invasive weekly injections, a shining light has been Tegan’s time spent in the Starlight room.
The Starlight Express Room is a medical-free haven for sick children at the hospital, filled with fun and enjoyable activities – allowing Tegan to feel like a ‘normal’ kid again and take her mind off her illness.
“I love the Starlight Express Room because it gets me out of my hospital bed and distracts me from medical stuff,” she said.
“I find it inspiring to be there; I feel positive and it gets my mind off my sickness. I also get to socialise with other kids and families in there.
“In the room I like playing Mario Kart, painting, arts and crafts and love participating in the quizzes and featuring on Starlight TV.”
Ms Ashley-Pye and Tegans father, David Pye, have both had to take time off work to juggle the demands of Tegan’s medical treatment.
“From dealing with Tegan’s emotions towards her injections, to having to swap around my work shifts and miss work, to juggling all of the medical appointments and now adjusting to tele health appointments due to Covid-19 – a lot has changed,” she said.
“I’m fearful for what lies ahead for Tegan’s future as her condition will worsen in the coming years with most likely many more visits to hospital and only recently she was back in hospital with an elbow infection.
“It’s hard for me to administer Tegan’s chemo injections and also it’s a lot for us to stay on top of all of her medication.”
Ms Ashley-Pye described daughter as a “unique young lady” who is loving and happy with a friendly personality.
“She can be stubborn with all of her medication and treatment but that’s understandable,” she added.
“She has a lot of time for her friends and family. She always tries to do the right thing and is mindful of others.”
Donations can be made to the Starlight Foundation at starlightday.org.au to help the charity continue to bring happiness to sick children, like Tegan.
All money raised between now and Sunday May 3 will be matched by Starlight’s corporate partners.
“We would be lost without the Starlight Express Room and Captain Starlights,” she said.
“The captains relate to the children and support them and have such big hearts.
“They make Tegan feel so joyful when she’s hospitalised and for us as parents, they help bring us down to a happy level when we’re feeling overwhelmed by medical stuff.”
