Actress Victoria Smurfit and daughter Evie (14) appeal to public to help find a cure for macular dystrophy
Actress Victoria Smurfit and her 14 year-old daughter Evie have appealed to the public to help find a cure for blindness by funding research.
Evie and Victoria revealed on the Late Late Show last month that Evie has Stargardt disease, which leads to reduced central vision.
As yet, there is no treatment or cure. And because it is a rare condition, Evie had to really fight to get a diagnosis, her mum explained.
Victoria said: “In March of 2017 I was fighting with the local optician, as despite endless trips to them and the highest tech glasses, Evie still couldn’t see the board at school. How could she possibly have the correct prescription?”
After the optician probed further, a problem was discovered, and Victoria received a phone call one Friday at 5pm.
“When she said macular dystrophy, it meant nothing. The last thing she said to me on the phone was ‘don’t google it’, so of course I did. It said that there was no cure and that it would lead to central blindness. I sat on my bedroom floor and hyperventilated as quietly as I could so the kids couldn’t hear me downstairs. I booked us all in for the Monday to find out. It was a long weekend."
"At this point nothing was said to Eve. I will never forget the look on the consultant’s face as he scanned Evie’s eye pictures. It was an imperceptible shift that changed everything.”
The diagnosis was life-changing for the whole family, but they were determined to try to create something positive from it.
Evie explained that her mum "is an incredible speaker and artist. She created ‘Stargirl’ a hero who has lights shine out of her eyes. She has spoken at an RNIB fund raiser and done a TED talk at school, educating kids as to what this genetic condition is, and what it means. She is my hero.”
Fighting Blindness funds cutting edge research to develop treatments and cures for sight loss conditions, including Stargardt disease. For more information on the work of Fighting Blindness, visit www.FightingBlindness.ie