Mother reveals the bizarre sign that her daughter had a terrible incurable disease which doctors dismissed as ‘growing pains’
- Victorian girl Tegan Pye was diagnosed with system scleroderma in August 2019
- The condition means her skin hardens and can impact organs such as heart
- The 12-year-old’s bizarre symptoms were initially believed to be growing pains
When Tegan Pye complained of pins and needles in the morning doctors dismissed her symptoms as ‘growing pains’.
But her mother Dani knew something more serious was going on when she noticed her daughter struggling to open the front door.
‘It looked like she was doing it backwards,’ Dani told Daily Mail Australia.
‘I tried to show her how to open it but she kept saying she couldn’t do it like that.’
Dani who lives in Packenham, 53 km south-east of Melbourne, with her husband David, Tegan and her 22-year-old son Kyle, fought to get a diagnosis for her daughter for ten years.
Despite seeing five medical professionals all dismissed Tegan’s symptoms as ‘growing pains’ or ‘viral infections’.
However, something told Dani to keep pushing for a second opinion.
When Tegan Pye complained of pins and needles in the morning doctors dismissed her symptoms as ‘growing pains’
Tegan Pye (pictured with her mother Dani and father David) was diagnosed with system scleroderma in August 2019
WHAT SYSTEM SCLERODERMA?
Tegan has been diagnosed with system scleroderma, which means her skin and tissues thicken.
However it can also cause major damage to her lungs, oesophagus, heart, kidneys and gastrointestinal tract.
The illness can be life-threatening.
More than 6,000 people in Australia have been diagnosed with the illness.
It is extremely rare in children with most people diagnosed between the ages of 40 and 60.
Women are three to four times more impacted by the illness than men.
Source: Scleroderma Australia
‘The front door was one thing that was getting to me because she would go to turn that knob and it would just be completely abnormal how she would try to turn that handle,’ she said.
Tegan, 12, was eventually diagnosed with system scleroderma in August 2019, an incredibly rare disease which affects just 6,000 people in Australia.
It causes hardening and tightening of the skin, joint inflammation, and can affect the heart, kidneys, lungs and oesophagus.
In extreme cases it can also cases can cause organ failure.
Dani, who is 44, said that Tegan was didn’t really understand what her diagnosis meant but became distressed when she saw her mum crying.
‘She was sad and heartbroken because she could see me who was shocked and in tears so she could see something wasn’t OK,’ she said.
The schoolgirl must now endure low-level chemotherapy and has blood taken regularly.
Tegan is on daily medication and needs invasive weekly injections, which leaves her feeling tired and nauseous for days on end.
She must have regular tests to check her heart, lung function, X-rays and CT scans.
Tegan is forced to have injections to manage her condition but she hates them so much that she wears a VR headset to take her mind off them
Tegan’s condition can cause her skin to harden, making it impossible for her to use her legs
These are to ensure her condition hasn’t impacted her organs.
The family have regular meetings with physiotherapists in order to help Tegan with her movements when her limbs freeze up.
Tegan has been forced to endure hospital for long stints on four occasions – during her initial testing, six weeks after her diagnosis when she was unable to walk, in November 2019 and in January 2020.
There were times when she was unable to get out of bed, or use the bathroom on her own or do basic things such as put on her shoes.
Dani said she just wants her daughter to be able to fully understand her condition and teach her how to manage it.
‘I want to teach her to be able to do her own injections. She can’t come to terms with the injections. She can’t stand the smell of the alcohol wipes. She covers her nose,’ she said.
Dani wants Tegan (pictured together) to be able to have her own home one day
‘We just want to set her up. At the moment we are trying to set up the house for her long-term so she can open the front door and get in the shower and bath.’
One day Dani wants Tegan to be able to have her own home, equipped with all the necessary equipment that would help her manage her condition.
But she also wants her daughter to be happy and enjoy life to the fullest.
One charity that has helped with that is the Starlight Foundation, which aims to brighten the lives of seriously ill children and their families.
Tegan was thrilled when they granted her wish of going to Queensland with her parents and best friend.
The Starlight Foundation have been a massive help in brightening Tegan’s time in hospital
Tegan pictured in hospital
‘Starlight has been wonderful. They shed a light and it helps her get through her bad time,’ Dani said.
One of the nurses submitted Tegan for a Starlight wish, which was granted late last year.
Dani said they considered everything – including transport, accommodation, giving her a Polaroid camera for the occasion and bringing along Tegan’s best friend.
‘We were just gobsmacked with the attention to detail they put in. Without people raising money for this awesome team [it would be awful]. This organisation helps takes these kids minds off what is going on.’ she said.
‘They’re like another family. If there was no Starlight, Tegan would hate going to hospital.’
Starlight is launching their Tour de Kids campaign in September, which encourages cyclists to go the distance to raise money for the foundation.
Cyclists are encouraged to jump on the bike every day to inspire donations.
More information about Tour de Kids can be found here.