We are delighted to welcome Victoria Smurfit and her daughter Evie on board as Fighting Blindness ambassadors.
Evie has Stargardt disease, which leads to reduced central vision. As yet, there is no treatment or cure. As it is a rare condition, Evie had to really fight to get a diagnosis.
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 forcefully insisting, the optician agreed to have photos taken of the back of Evie’s eyes.
Meanwhile, Evie’s school suggested she might have ADHD. Out of respect to the school, Victoria took her to see a specialist who prescribed Ritalin. Both Victoria and Evie knew in their hearts that the diagnosis wasn’t correct, but decided to give the medication a try anyway. By day 2, they threw it in the bin.
It was a Friday at 5pm when the call came in from the optician saying that Evie had to go to a specialist. Again, Victoria had to be very insistent to find out what she thought might be wrong.
“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’ll 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. As her mum, Victoria did her best to empower Evie, not to let her disease define her, but to have her perceived flaw be her superpower.
“She is an incredible speaker and artist. Evie created Stargirl, a hero who has lights shine out of her eyes. She’s spoken at an RNIB fundraiser and done a TED talk at school, educating kids as to what this genetic condition is, and what it means. She is my hero.”
You can make a true and lasting difference
For Evie, and thousands of children like her with sight loss conditions, there is hope for the future. Fighting Blindness funds cutting edge research to develop treatments and cures for sight loss conditions, including Stargardt disease. But we cannot do it without you.