Courageous Juliana is an inspiration on the ice rink
An inspirational teenager is calling on people to pull on their jeans to help raise cash to help those with genetic disorders.
Juliana Sweeney-Baird (13), from Bearsden, has Bardet Biedl Syndrome, a rare genetic disorder that results from mutations in at least 14 different genes.
It causes a number of symptoms, including vision loss and obesity.
Juliana was unwell as a child but it was only when she began to have vision loss, aged around seven, that doctors began to suspect an underlying genetic disorder.
Her mother, Margarita, noticed her bumping into things at night and eventually extensive eye tests revealed she was losing her sight.
Margarita said: “We were told a couple of conditions it could be, and that terrified me.
“Two of the other possibilities lead to a short life expectancy and that was so scary.
“So I was relieved when, in June 2015, we were told it was Bardet Biedl Syndrome, which meant she was likely to lose her vision by around 20 but would live.
“Getting the genetic diagnosis was life-changing – we knew what we were dealing with, which meant Juliana was taken seriously when she had problems at school, and people stopped doubting me.”
But Juliana hasn’t let her symptoms hold her back, particularly when it comes to her passion for ice skating.
Using a guide - usually her mum or brother Kenny - she’s won titles and is currently British Inclusive Skating Advanced Novice Champion and British Blind Sport Novice Champion.
And that’s thanks to the charity Jeans for Genes, who fund the inclusive skating events.
Juliana said: “Juliana’s trainer says given her condition, she’s at the level of an Olympic champion.’ And Juliana is a champion.
“I’m so glad to have the funding from Jeans for Genes Day for the first Inclusive Skating for Genes Championships.
“Individually, genetic disorders are very rare, but there are a lot of affected children. One in 17 children has a genetic disorder.
Having this event to focus on can make such a difference to their quality of life and also helps raise awareness of genetic conditions and the disadvantage that those with genetic disorders face in sport and life generally.”
Jeans for Genes Day is on Friday, September 22 and everyone is invited to wear their jeans to work or school in return for a donation. Sign up for your free fundraising pack at www.jeansforgenesday.org.