Most of us rely on our sight every single day, from walking down the street to making our dinner. But imagine if we couldn’t use our sight to navigate our way through these simple tasks. Imagine then, stepping onto an ice rink to perform for a crowd, on narrow blades, with very little to no vision.
This is something which Juliana Sweeney is well used to. The 14-year-old is partially sighted and expects to lose all of her vision by the time she is 20, but this doesn’t stop her from performing all over the world on the ice.
Juliana is one of just 200 people living in the UK with BBS1, which affects cells in the body to cause gradual and, eventually, complete sight loss.
The syndrome also causes obesity, kidney disease, endocrine disorders joint laxity and hand and feet abnormalities.
BBS1 causes multiple complications and Juliana is accustomed to spending around 20 days a year in hospitals or at appointments.
But despite this the Glasgow-born skater has competed in Iceland, Canada and America. She has also given exhibitions in Finland and is due to travel there for a competition this month. Most recently Juliana competed at the 2017 World Figure Skating Championships Festival in Colorado where she took three gold medals.
She began ice skating when she was seven, when Juliana’s mum, Margarita, took her to watch the World Championships in 2010 where she was mesmerised by the skaters.
Prior to the age of seven Juliana hadn’t been well enough to try sports, spending a lot of time in hospitals for breathing difficulties.
When she joined group lessons Juliana knew she’d found her ‘thing’. But due to the extra bone in her feet, no European skates fitted her properly, so Juliana had to skate through extremely painful sores and blisters.
However, recently Reidell agreed to make an extra wide template for Juliana and other Cerebral Palsy skaters who have splints, maximising comfort for disabled skaters everywhere.
Now Juliana travels internationally to represent her country and perform at some of the most spectacular rinks the world has to offer - in her made-to-measure skating boots.
Juliana commented: “My favourite thing about the sport is how I'm able to move to the music so freely.
“Since I always loved to dance and move to the music, but I hated the thought of being in a dance studio - whereas I always loved being on the ice.
“I feel amazing when I'm skating in a competition because it allows my competitive side to be fed and I feel that I'm doing something normal that everyone can do.”
Juliana recently appeared on a BBC Three video which introduces the popular TV series Amazing Humans.
Her story is one which will surely inspire young people everywhere with the courage to push through barriers and pursue the things they love most.
Margarita Sweeney-Baird, mum and Chair of Inclusive Skating said: “Juliana had problems right before birth. The list of the ways in which the syndrome affects people is a long one, but you’d never know it when you watch her skate.
“She took to ice skating straight away when I took her to group lessons when she was seven. The rest, as they say, is history and now she drags me to every single ice skating session she can!
“But as well as being partially sighted, Juliana doesn’t regulate temperature, so we have to be careful to control this when she’s skating as she can easily overheat. Her heart rate and breathing can also become unregulated too, not to mention her sight loss.
“But I’m sure it can be easy for spectators to forget all of that when she is on the ice. Juliana is a lovely young lady who really expresses the music.
“The character trait which shines through the most when she skates is her resilience. Even if something goes wrong or is difficult she keeps trying. BBS causes fatigue and lethargy but you would never think of that when she is skating. She gives 100%, always.”
Thanks to Inclusive Skating, Juliana and others with various kinds of disabilities are able to fulfil their best potential and excel on the ice.
The organisation offers a wide range of events, making the sport accessible to absolutely everyone, no matter what their disability.
Margarita continued: “Inclusive Skating has a wide range of events so absolutely everyone with a disability can take part.
“We even include wheelchairs and skaters on Frames and Harnesses. The impairment compensation equalises the disabilities and ranges from 0% to 95%. So, even those with autism and Asperger’s syndrome and no physical disability can take part.
“The facilitation gives all the skaters the support they need to take part safely and happily. We provide accreditation to the skater's family and facilitators at events. So, skaters are very safe and well cared for at all times.
“Inclusive Skating is also very flexible. Skaters can choose elements they can do well. The coaches choose the technical level for the skaters. There are no entry tests. So, if a skater has a disability that prevents certain elements they can choose different elements.
The number of elements is limited so skaters have the time to interpret the music. This means the Inclusive skaters love their skating and are very expressive.”
Juliana is determined to make every second count on the ice, as she expects to lose all of her sight by the time she is 20. She’s collecting all the memories she can and doesn’t let anything stop her competing.
She added: “I have some tips to help deal with nerves; I like to be really organised so that I’m completely focused – I don’t let myself think of the pressure or of what could go wrong.
“I like to listen to music or watch TV to take my mind off of things before I compete, I try not to be around people who will make me nervous or panic about performing.
“This way I can make sure I skate my best and enjoy every moment of being on the ice.”