By Melissa Grant
A Pakenham girl is determined to live life to the fullest as she battles a rare and debilitating autoimmune disease.
Many who are friends with 14-year-old Tegan have no idea she has been diagnosed with systemic scleroderma.
The condition causes hardening and tightening of the skin, joint inflammation, and can affect the heart, kidneys, lungs and oesophagus.
Mum Daniele says the diagnosis in August last year came as a shock following years of unexplained symptoms that were put down to ‘growing pains’.
“I was in disbelief, it really hurt that they were saying,” Daniele recalled.
“I’ve never heard of anything about it and then it was a learning curve, learning what it was about.
“It breaks my heart. It breaks Tegan’s heart.
“It attacks the circulatory system, the oesophagus, the kidneys, the lungs. It just debilitates her.”
There’s no known cure for systemic scleroderma and there are few cases Tegan can relate to.
The disease affects more women than men and usually occurs between the ages of 30 and 50.
However, Tegan first experienced symptoms as a young girl.
“At five or six, she woke up one morning and she couldn’t use her hand. It went on for two weeks. They said it was a virus and would go away,” Daniele recalled.
“From there it just got worse with her hands – she couldn’t make a fist.”
Tegan’s symptoms worsened dramatically a couple of months after her diagnosis. At one point she was unable to walk and feed herself.
In recent months, intense physiotherapy has helped Tegan overcome shoulder and hip pain. The teen has encountered some major problems with her Achilles, which means she will have both legs going into casts at the same time.
She has also experienced a bit of tightening in her fingers, while her wrists are causing her a bit of pain.
“The physio and OT (occupational therapist) are working with her every week trying to help mobility with lots of stretches and exercises,” Daniele said.
Throughout this year, low dose chemotherapy injections and a drug therapy involving a painful injection to the stomach have helped alleviate Tegan’s symptoms.
“The injections have helped tremendously. But having said that we do have our good and bad days,” Daniele said.
“There are lots of ups and downs – you just go with everything.
“Tegan knows what she can and can’t do.
“She’s a happy-go-lucky thing – she doesn’t let it get her down. A lot of people don’t know she has this.”
The Pakenham Secondary College student loves netball and throughout much of her health battle has managed to keep playing, although Covid-19 kept her off court for a while.
“In saying that we have had bad times when she comes off court. But she loves the game – she says she’s not going to let her disease stop her from doing what she loves,” Daniele said.
The Starlight Children’s Foundation has also helped the Pye family, including Tegan, remain positive.
In the Monash Children’s Hospital, the Starlight Express Room has given Tegan a lot of joyful experiences.
She plays games, enjoys arts and crafts, socialises with other children and has loved getting onto Starlight TV.
Before Covid-19 restrictions earlier this year, Tegan was also lucky enough to have the Starlight Children’s Foundation grant her a wish.
She chose to go to Queensland where she went parasailing, jet boating and to Wet ‘n’ Wild.
Big brother Kyle decided to stay at home so Tegan could take her best friend along for the experience.
The foundation organised everything – including the six-night stay at the hotel, flights and airport parking.
At one point, Tegan said: “Mum this is like royalty, I can’t believe this!”
Daniele said the experience made the entire family see things in a different light.
“That was fantastic – it took us a world away from what was going on,” she said.
“Having that experience with Starlight has made us think a little differently. You need to think positive, you need to think day by day.”
The Pyes have made it their mission to raise funds and awareness for the foundation which has given them – and other families with sick children – so much.
“We couldn’t be any more thankful and grateful for the foundation,” Daniele said.
“It took us out of a dark place, it took us to a much lighter place. They brought the fun times back.”
Starlight needs to raise $1.3 million to bring happiness to more than 30,000 sick kids in hospital and in the community this Christmas. To donate, visit https://www.starlight.org.au/christmas
