Bury St Edmunds: Dream comes true for young Tegan
SCHOOL girl Tegan Harvey had never been on a family holiday abroad - because the chances of her falling seriously ill has been an ever present danger.
That has all changed now, and the seven-year-old, who lives with her family in Walsham le Willows near Bury St Edmunds, has just enjoyed a dream holiday in Florida.
Tegan, a pupil at the Riverwalk School in Bury, has a rare syndrome which affects her brain and muscles. She suffers stroke-like episodes and epilepsy and can rapidly go from being perfectly well to very poorly.
Her mother Nicola Harvey, 36, told how the trip of a lifetime to Disney World, Universal Studios and Sea World came about after a chance encounter at a fair with a charity called Caudwell Children.
The charity runs a scheme called Destination Dreams for children with life-threatening illnesses. She applied for a place for Tegan on one of their trips.
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When Mrs Harvey found out the family, which includes father Leigh, 39, sister Caitlin, 13, and brother Lucas, 11, had won a place on the holiday she was stunned.
And the family was even more delighted to discover that all they had to do was pick up their passports, pack their bags and hop on the plane. All the arrangements were taken care of and a dedicated medical team - inlcuding a paediatric consultant - flew across the Atlantic with them.
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“It was totally stress free,” said Mrs Harvey. “We’ve never been abroad with the children because Tegan has epilepsy and because you just don’t know how a flight will affect her.
“Never in a million years would we have risked taking Tegan on a nine hour flight without the back-up of the medical team that Caudwell provided.
“It is without a doubt the most memorable and special thing that we have done as a family.”
Tegan’s favourite moments during the week-long trip were meeting princesses and fairies in Disney World.
“She was a bit awestruck,” said Mrs Harvey. “It was a bit mind-blowing.”
The family also got to stay in their own villa at Give Kids the World, a resort designed for children with high dependency medical needs.
One of the most special parts of the trip, said Mrs Harvey, was travelling with 21 other children with life-threatening conditions, and their families.
“It was the only place we’ve ever been where it felt normal to be in this family. All the other families were in the same boat,” she said.
Although Mr and Mrs Harvey knew Tegan had a genetic condition from about six months, she was only diagnosed with Mitochondiral Myopathy, Encephalopathy, Lactic Acidosis and Stroke syndrome (MELAS) in January last year.
Asked how the condition affects Tegan, Mrs Harvey said: “Day to day she is generally a cheeky and happy little girl. But the condition she has is very changeable and she can go from being very, very well to being very, very poorly quickly, she can just suddenly go down hill.”
Trudi Beswick, chief executive of Caudwell Children, said: “The Destination Dreams trip takes these families away from constant medical appointments and the stress the families and youngsters are often experiencing.
“It can also help families with the ordeal of their child’s life-threatening illness, by spending time with other families experiening the same trauma.”