South Tyneside youngster with rare genetic disorder defies odds to be a dance champ
A rare genetic disorder hasn't prevented a brave South Tyneside youngster from becoming a dance champion.
When she was a baby the parents of Evie-Mai Davis feared she might never walk - but now she competes in dance competitions.
The nine-year-old has the rare genetic condition, Beckwith Wiedemann Syndrome, which causes children to grow at an abnormal rate.
In Evie-Mia’s case the right hand side of her body grows quicker than the left and she has already had to undergo an operation to put plates in her knee to stunt the growth of her right leg.
But, the Hebburn youngster won’t let her condition get in the way of her love of dance and regularly competes in ballet, tap and performing competitions, often taking the trophy.
Proud mum, Siobhan Davis, 32, said: “We are so proud of her.
“When you have a six-month old baby with a diagnosis like this, it is terrifying because you don’t know what the future will hold.
“We didn’t know if she would be able to talk properly or even walk, but to see her singing and dancing is just amazing.”
When Evie-Mai was born, three weeks prematurely, she weighed 8lb 4.5oz, which was huge, and midwives noticed her tongue was enlarged.
Genetic testing was carried out at The Centre for Life in Newcastle and it was confirmed the tot had Beckwith Wiedemann Syndrome, which affects around one in 15,000 babies.
Not only does it cause an increase in bone and muscle growth, in Evie-Mai’s case on her right hand side, it also means tissue grows too quickly, which puts youngsters at a 60% higher risk than other children of developing cancer.
Siobhan, who is married to shipbuilder Lee, 31, and is also mum to Jaxon, five and two-year-old Lucas, said for the first eight years her daughter had to have indepth scans every four months to look for cancer growths.
The risks reduce with age, so when Evie-Mai reached eight-years-old doctors reduced the scans to once a year.
The admin worker, who lives in Tha Maples, Hebburn, said: “It is horrendous waiting for the results every time, but we have been lucky.”
At the age of five Evie-Mai had plates placed in her right knee cap in a bid to stunt the growth of the leg, otherwise it could have ended up 9cms longer than the left.
The plates were removed when she was seven, but the procedure might have to be carried out again depending on how she grows. Her right arm is also slightly longer than the left.
Evie-Mai’s walking and crawling was a lot later than other babies because her right side was heavier than the left and she has undergone extensive physiotherapy. Even the hair on the right side of her head grows thicker and quicker than the left.
Siobhan enroled her daughter in dancing at the age of two and she dances with the Dancetastic School of Dance in the town.
She said: “I took her to dancing because I thought keeping her fit and strong would help, but it turned out she had a talent for it.”