Victoria Smurfit’s daughter has been praised for her bravery after she appeared on the Late Late Show to talk about being diagnosed with an eye condition which eventually leads to blindness.
14-year-old Evie was joined by her mum for an appearance on the Friday night chat show, where she spoke about the impact Stargardt’s Macular Dystrophy has had on her life.
She recalled how she first realised something was wrong when she couldn’t see the board from the back of the classroom. She was prescribed glasses, diagnosed with ADHD and prescribed Ritalin – however, nothing helped her sight.
After her mum persisted with different doctors, Evie was diagnosed with Stargardt’s: a rare genetic condition that causes the macula and surrounding retina to deteriorate.
She described it as:
“A rare genetic eye condition that basically means my retina cells deteriorate. It basically means that my focus is getting less sharp.”
When host Ryan Tubridy asked her what she was able to see, Evie explained that it felt like “yellow fireworks exploding everywhere”.
She added:
“[It’s] like fairy lights draping in front of my place and I have to look through them.
“If I look into the audience, I can’t see faces or like, exact clothing articles. I can see blurs.”
Evie said that she finds many people don’t understand who it affects her life – and some can be “quite insensitive” when talking about it.
She continued:
“It really has changed a lot of my perspective on things.
“When I tell people how bad it is a lot of people think I’m over-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 the chance to see through my eyes they would really understand.”
The teenager sadly said that her eyesight is deteriorating every day, and that she knows her “eyesight will never be as good as it is right now in this moment”.
Evie recalled how when she was an 11-year-old, she tried to search for celebrities and other people on Google who had the same condition as her.
But as she found very little, so she invited a character called Star Girl, who could “shoot fireworks out of her eyes”.
Evie, who is the eldest of Victoria’s children, said that she was sharing her story to help promote the charity, Fighting Blindness.
She added:
“No one will find a cure if we all just sit on our butts and complain about it. I’m currently sitting on my butt and complaining about it. Not good!
“I’m sitting on my butt and teaching you.
“I would like people to take away that I’m not your average girl and I’m never going to be the average girl and that we need your help.”
Her mum also encouraged viewers to donate to fightingblindness.ie.
Viewers took to Twitter after the segment to praise Evie for her bravery.
Wow! What an amazing young woman, Evie is. To come on the Late Late and to describe her condition to make people aware of it and to let others with it know they are not alone. Kudos, Fantastic young lady!
— Grace Delaney (@gracedelaney) November 17, 2018
https://twitter.com/katieee15x/status/1063628864482611201
Evie a lovely brave young girl with a very difficult diagnosis. Wishing her very well and hopefully the possibility of treatment to arrest the condition in the near future.
— DrD (@deirdrepd1) November 16, 2018
My 14 yr old nephew was diagnosed with this disease this year and devasted us, hopefully a cure can be found someday, evie is a wonder ful young lady x
— Elaine Ritchie (@lennyritchie) November 17, 2018
Well done to this girl and to see her mam constantly reassure her is a testament to Irish people. She is using her limelight to spread awareness and fair play for doing so .
— NK (@NubbyK) November 17, 2018
What a wonderful, inspirational young woman. Proud parents and rightly so. We should be grateful for every small grace and gift we have and never take anything for granted. Good luck Evie and make sure you keep us engaged and involved x
— Kaitrina Chonraoi (@katrinanicri) November 17, 2018
