The actress Victoria Smurfit and her daughter Evie are raising funds for Fighting Blindness, a charity which aims to cure blindness and support those experiencing sight loss.
In March last year, Evie found herself struggling to focus in school. The school suspected that she might have ADHD and she was referred to a specialist and put on Ritalin, but after three days she began experiencing side effects and came off the medication.
She was subsequently diagnosed with a rare degenerative eye disease called Stargardt Macular Dystrophy, which means the retinal cells are dying due to a genetic defect. There is no cure for the condition and it tends to begin at the onset of puberty.
Evie describes her symptoms as "yellow fireworks going off in the distance — every day is the fourth of July for me."
She says, "It wasn't really scary when it first started. It was just confusing because I thought everyone had the yellow fireworks."
When she found out what her condition was, her first question was whether her brother and sister would also have it.
It's taken Evie "a lot of time" to come to terms with her diagnosis, but now she says she's "moving forward and owning it."
Her goal is to help inspire other children with the condition "to stay strong and capable, because they can achieve anything they want to achieve."
To help support Victoria and Evie's fundraising campaign, visit fightingblindness.ie
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