Kelly Smith and her daughter Paislee have a lot for which they can give thanks this year.
Paislee in fourth grade at Fletcher Elementary School in a regular classroom setting. Smith said her daughter enjoys art, specifically drawing, which she said Paislee is also very good at and which her family has purchased adaptive equipment to help her be able to see to do. Paislee has a love for art, and made it into her school’s art exhibit last year that only 25 students from each school were picked from. She has also submitted a piece to an art exhibit that featured all blind artists.
It’s remarkable given Paislee was diagnosed with bilateral colobomas of the iris, retina and optic nerve when she was three months old. Bilateral colobomas is a hole in the structure of the eye, where the eye never finished its development in utero. One in 10,000 babies are born with this condition. Smith said some people born with this condition have no vision problems at all.
“Paislee has it in both eyes and it affects her central vision,” Smith said. “But, she is all about adapting. She has learned to cross her eyes to use her peripheral vision as her central vision.”
Paislee qualifies as legally blind, and was diagnosed at three months old as Smith and her husband noticed something different about her eyes during the three month old check up.
“She just happened to be sitting under bright light and looked up and we noticed an old fashioned keyhole shape in her eye, making it look almost like a cat’s eye,” Smith said. “We asked what it was and the doctor told us but said it might not affect her at all. We didn’t know how much it affected her until she was six months old.”
Ever since she was six months old, until now Smith said there have been a lot of doctors appointments and therapists. She added that Paislee can read large, bold print and braille and has put hours into learning to use her cane.
“She constantly has to adjust to the world that does not adjust to her, but she makes it work incredibly well,” Smith said.
October is Blindness Awareness Month, and while October is now over, Smith said she shared what she coins a “Paislee Fact” every day throughout the month, which is something she began about three years ago after someone in the grocery store asked about Paislee’s eyes. The idea behind the “Paislee Fact” is to educate, as Paislee’s condition is not common and Smith said if more people around Paislee know more about her condition they may be able to help if something potentially goes wrong, such as retinal detachment.
“People are curious, it’s a natural thing,” Smith said. “I wanted to help educate them, but to do it in the correct way. It’s not just facts about Paislee’s eyes either, it’s her everyday life like how she pours a drink with her finger at the top of the glass to measure when it’s full. It’s the little things that are huge to her that people shouldn’t take for granted and my daughter rocks it.”
One such fact that Smith might share is that when a person has bilateral colobomas and has their picture taken with the flash on their eyes will have a white glow that reflects the colobomas, even for some that are not able to be seen. If someone’s eyes have a white glow in the photo and they do not have colobomas, Smith said nine times out of ten it may mean a type of eye cancer and should be checked out.
Paislee is more than just her condition, and Smith described her as having the biggest heart, being sweet and kind, determined and incredibly independent. She added that sometimes people will see her and stare or feel bad when they see her using her cane, but to not do that because Paislee does not feel bad for herself.
“If we fail at something we try again,” Smith said. “Paislee is kind and resilient and she loves helping others. Her best friend has Type One Diabetes and when her monitor goes off telling her she has low blood sugar, Paislee is the first to the cabinet to get her a snack. And when Paislee is struggling to do something like go down stairs her friend is the first to help her, too.”
Bilateral colobomas and legal blindness is something that Smith said is important for people to learn about as before Paislee’s diagnosis she knew nothing about it. Paislee is almost 10 and Smith referred to the time since her diagnosis as a time of learning, saying the family went into it learning and have continued to learn along the way. Additionally, Smith said she did not know before how many blind people were in Chautauqua County or how many blind children there were, but that for them it is something that is almost normal now.
Smith encouraged anyone who may have questions if they see them or anyone with a similar condition around such as in the store to come up and ask questions. She said they are always happy to educate, and that she has taught Paislee to answer any questions as she sees fit.
“It’s absolutely OK to be different and it’s important to educate people and let them into Paislee’s world,” Smith said. “There are things I didn’t know until I started doing the ‘Paislee Facts’. I have other children who have their full sight and even their world is different from Paislee’s. We use this as a teaching tool, because knowledge is a powerful thing.”