A Seattle girl hopes a clinical trial in Canada will help save her vision. She has a rare eye condition that could someday make her legally blind.
Calnan Sorenson, 7, cannot see as well as other kids her age. She's able to bounce around on a trampoline with her brother in the yard of their Wedgwood home, but as she gets older, her family worries she won't be able to lead such an active, animated life.
“It's terrifying, and it's really hard to adjust expectations for the future,” said Matthew Sorenson, Calnan’s dad.
Calnan has a rare eye condition called Aniridia. A genetic mutation is preventing her eyes from developing. The most noticeable symptom is the absence of the iris, the colored part of the eye. The disease could eventually make her blind.
“The situation of, there isn't really any option, is the situation we were in for the first couple of years after she was diagnosed, and it was tough,” Matthew said.
Now there is an option. Calnan is among a few dozen patients, mostly kids, taking part in a clinical trial of a drug which researchers hope will halt the deterioration of her eyesight.
Every three months her family travels to Vancouver and the University of British Columbia, where a pair of researchers are testing a treatment for Aniridia.
“Once it's the day of the appointment I feel a little scared and nervous,” Calnan said.
The exams are uncomfortable, but Matthew says his family is hopeful the quarterly trips across the border could help save Calnan’s vision.
“We've seen smaller indications of progress, things like how far away she can sit from the television. We've just sort of noticed that she doesn't need to stand in front of the TV anymore,” he said.
This is still very much an experiment, and so Calnan is learning braille and working with a teacher who can help her prepare for the possibility of life with less eyesight.
For now, her family just wants her to enjoy being a kid, not worrying too much about a future that's still unclear.
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