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Amy and Greg Safko knew early on that their daughter Emily had vision problems. When Emily was 2, doctors told the Medford, N.J., couple that their daughter was highly nearsighted.
“We knew something was off,” says Amy Safko. “She would pull everything right to her face.”
Then, three years ago, Emily’s vision declined dramatically. She was diagnosed with a rare genetic disorder call Stickler Syndrome, which damages the eyes, along with the ears, and connective tissue throughout the body.
Emily’s vision problems came to a head late last year when she started noticing spots and flashes in her field of vision—floaters—and she suddenly couldn’t read the blackboard in school. What followed were multiple surgeries and, finally, the finding that Emily, now 10 years old, is legally blind.
All of which makes Emily’s fourth place finish in the under-12 Celtic harp competition at the Fleadh Cheoil last month—the annual “world series” of Irish music—that much more remarkable. Some might say it was miraculous.
“She’s remarkably better than we ever could have expected,” Amy says. “We are just so happy.”
Optimism apparently runs in the family. When she learned of her condition, Emily recalls, “I thought it was cool because not many other kids have it. It wasn’t getting me down.”
Stickler Syndrome also appears to run in the family. Testing showed that Amy Safko herself had Stickler, but had never been symptomatic. She had been born with a cleft palate, which is associated with Stickler Syndrome. Additionally, her joints had always been hyperflexible, which can also be a sign.
The family’s upbeat attitude was sorely tested in the months leading up to the Fleadh Cheoil (flah KEE-ole), held in August in County Cavan.
Following her surgeries, doctors told the Safkos that Emily had a long road ahead of her. “Her right eye has no lens,” says Amy. “The left eye is the better of the two. She still has a cataract they didn’t want to touch.”
Emily’s eyes are both filled with silicone, a temporary step to help promote healing, her mother explains. “The silicone was put in there as part of the retinal detachment repair. It usually comes out in three months, but she still has it in both eyes. If they work on the cataract, the oil can get in other parts of the eye. No one wants to touch that eye.”
Overall, Emily lost a month of practice time leading up to competition season, and when she was finally able to start playing again, nothing about it came easily.
“I had to re-learn harp, sort of,” says Emily. “At first, I lost some parts, but my teacher always talks about ‘muscle memory.’ My fingers remembered.
“It was really tricky with the strings. When I started to play the harp again in January, the strings were all weird. Some of the strings are see-through, and I couldn’t see them at all.”
Those difficulties held Emily back for just a week. “It doesn’t take long for me to remember things. Once I learn a tune, all I have to do is put my fingers in the starting position, and then I just go from there.”
Before her most recent Fleadh, Emily had competed in Ireland twice. This is the first year she finished so high up in the rankings. She almost finished in the top three in slow airs. She tied for third, but finished fourth after a callback.
One reason for Emily’s strong finish is her deeply competitive nature, Amy Safko says. But support from the Irish music community provided another big boost.
“One of the biggest things that was so amazing to us was just how supportive the Irish music community was to us,” says Amy Safko. “We got cards from harpists every day from around the world, people we didn’t even know. Some of them sent gifts, and we didn’t even know them. It was amazing to us.”
As for where she goes from here, Emily Safko has no doubt about it. She wants to go back to Ireland next August to try again.
“It’s a lot of fun going there. I’m looking forward to next year.”