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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. Convinced they were giving me the runaround, I got quite shirty and almost accused them of conning me. How could she possibly have the correct prescription?
With a scary Irish woman in her office, the optician decided to do a photo of the back of Evie’s eyes and we were sent away home with nothing but a microfibre cloth to clean Evie's lenses.
Evie's school thought she may have ADHD, which to me was a catch all for “we don’t know what’s wrong”. Evie has always been airy fairy, dreaming of the prince coming to get her, thinking of stories and spending a lot of time in her imagination. But out of respect to the school I took Eve to a specialist who said she HAD IT IN SPADES... Eve and I looked at each other in bewilderment. So we decided she would take the recommended drug for a week, no more, and if there was improvement then great, but if not, it’s gone. On day 2 we threw the Ritalin in the bin.
It was a Friday at 5pm when the call came in from the optician saying that Eve had to go to a specialist. ASAP. Now, in the U.S. no one wants to give you a diagnosis in case they are wrong and end up in a litigious situation. I had to become a very, very scary Irish woman to get her to tell me what she thought Eve may have. 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 called her Daddy, Doug and 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.
How do you start to make sense of something you can’t fix for your kid? It’s an untenable thought. When you’re the parent, it’s your job to FIX what’s wrong with your kid. There have been a thousand sleepless nights, googling, looking for ways, looking for avenues... The best I could come up with was to empower her. Not let her hide under a rock. Not to be a victim, but to have her perceived flaw be her superpower. She 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.
So, my message to parents is no matter what our kids have been given in the genetic lottery, there is no ONE WAY to live, but we must have knowledge and compassion for all who are not on the cookie cutter conveyor belt of life. This is partly why Eve wants to talk about it - to let people know these eye conditions are out there, so that the next teen doesn’t have to endure kids that don’t understand lifting up their hands and asking, "If you’re blind, how many fingers am I holding up?"
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Victoria and Evie's Fighting Blindness Appeal
Raising Funds for Fighting Blindness because Children with sight difficulties need our help
We fund research, counselling and advocacy to cure and support people with sight loss
Charity Registration No. CHY 6784