Teenager from Walsham-le-Willows who was not expected to live past the age of six will celebrate her 18th birthday in style
A teenager who was not expected to live past the age of six will celebrate her 18th birthday in style today
Tegan Harvey was born with a rare genetic condition called Mitochondrial Disease.
It means she cannot speak, has suffered constant seizures throughout her life as well as periods of extreme fatigue when she can hardly move.
Tegan, a pupil at Riverwalk College, Bury St Edmunds, was diagnosed with the condition when she was six years old.
At the time was given just four months to live.
But the plucky teenager has defied all the odds by continuing to live with a progressive condition, which affects the brain and muscles, into adulthood, delighting family, friends, and doctors, alike.
At 7.30pm today, her carer, and friend, Georgie Luppi, 20, has arranged a birthday party with a difference.
Some 30 performers, including actors, singers, musicians, dancers and magicians from around the country have produced 23 individual performances for the hour-long video, which Georgie has edited together.
Called An Evening of Joy, it will go live on Youtube this evening evening and will also raise money for a new chair for the youngster, which she badly needs for a comfortable life.
“I have been a family friend for many years but only became a carer for Tegan this year when one of her other carers had to shield,” said former King Edward VI School pupil Georgie, from Walsham-le-Willows.
Tegan is an amazing person, cheeky, funny and I love her to bits.
When she is going through a bad phase though, she can hardly move. The chair she uses has broken and it will cost around £5,000 to buy a new one.
“I spoke with some friends from school and Suffolk theatre groups, and also people I know through National Youth Theatre who were only too happy to help make the fund-raising video celebrating Tegan’s life.”
Tegan’s mum, Nicola Eley, an English teacher, at King Edward VI School, who also lives in Walsham-le-Willows, said: “At times, we have felt like we have been living on borrowed time – but Tegan is an amazing young lady.
“When we were told she only had around four months to live, it was horrifying – every parent’s worse nightmare. But she is a fighter and has amazed even the doctors.
Tegan can communicate in her own way, has an infectious laugh and everyone who meets her, loves her.
"We were planning something special for her birthday and were thrilled when Georgie offered to help out. It’s great to share her birthday with so many people.
“Tegan may not completely understand what is happening in the video, but she will definitely enjoy it.”
The video and fund can be found by following the link: Tegan’s Eighteenth at www.gofundme.com
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