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Image / Editorial

Victoria Smurfit’s teenage daughter Evie praised for bravely opening up about rare eye condition


by Jennifer McShane
17th Nov 2018
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It is never easy to talk about what may differentiate us from other people. We speak a great deal about the things which make us unique, and often it is these that can come to define us. But, as a young teenager, so many of us merely longed to fit in; appearing the same as everyone around us, content that we could grow into our differences in our own time.

For this reason, many are praising Irish actress Victoria Smurfit’s 14-year-old daughter Evie Baxter for her appearance on Friday night’s Late Late Show. The teenager appeared with her mother to openly talk about her being diagnosed with Stargardt’s Macular Dystrophy, a rare genetic degenerative eye condition, affecting approximately 600 people in Ireland which eventually leads to blindness. Appearing wise beyond her years, the teen eloquently and articulately spoke of suddenly having issues with her sight and an eventual diagnosis at just 12-years-old. Evie has not let the condition hinder her despite its challenges and spoke of her wish to continue being an activist to raise awareness for others with the condition.

The teen started to notice symptoms at just ten years old, in the classroom. The blackboard began to blur, she explained and had been moved to the back of the classroom for being quite the chatterbox. As time went on, the teen went to get her eyes tested, and when they found no issues, she was tentatively diagnosed with ADHD.

“I think if they had a chance to see through my eyes, they would really understand.”

Victoria, who was tenderly comforting and supporting her daughter throughout the interview, then explained that a doctor trialled Evie on medication and after a range of undesirable side effects, the family sought a second opinion – and a third opinion – until they found an answer. This included multiple trips to the opticians in an attempt to correct Evie’s blurred vision. The eventual diagnosis came, and Evie explained that her day-to-day sight as it is now, is often like trying to look through a “blur of fairy lights.”

“It’s changed a lot of my perspective on things,” she explained to Ryan, adding that people could be quite insensitive to how challenging her daily life could be. “When I tell people how bad it is, a lot of people think I’m exaggerating because I’m a teenager and my mother’s an actress. People are quite insensitive when it comes to it. I think if they had a chance to see through my eyes, they would really understand.”

She explained that her sight deteriorated on a daily basis. “It keeps deteriorating on a daily basis. I know my eyesight will never be as good again as it is in this moment. It’s quite sad, a 3 AM thought.”

Evie explained that she came up with a comic superhero at 11-years-old ‘Stargirl’ because she could find almost nothing on the condition.

Viewers agreed that the young teen was nothing short of inspirational and Evie herself explained that she decided to speak so openly about her condition in hopes that people might understand it fully and that an eventual cure could be found.

“Fighting Blindness – of which Evie and her mum are both patrons – has given me this amazing opportunity to speak and be a part of this.”

You can donate over on fightingblindness.ie and watch the full interview with Evie over on RTE Player 

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