Update on Rylee and Her Progress with Coats’ Disease
In April of 2014, we shared a story about Rylee, a 3-year-old girl whose rare eye disease was caught when her mother posted a Facebook photo of her with a yellow glow in her eye. Over the last three years, Rylee’s story has impacted children across the country. To kick-off Vision Month, we talked with Rylee’s mom, Tara, to learn more about Rylee’s progress after her Coats’ disease diagnosis and how sharing that photo changed their lives.
Since her diagnosis, Rylee is doing great. The Coats’ disease is stable, and she continues to see Dr. Jorge Calzada, the ophthalmologist at the Baptist Eye Clinic who has treated her since the beginning. “At her last visit in the fall, she was moved to once a year appointments,” said Tara. “She was previously going every three to six months. It’s exciting, but scary at the same time because you’re like ‘wow, what can pop up in a year?’ But the doctor feels confident she will continue to stay stable.”
Rylee shouldn’t need any additional surgeries or procedures performed on her eye anytime soon – hopefully ever – but her parents know there is a possibility that could change. By continuing the annual appointments, Dr. Calzada can easily keep an eye on her condition and recommend any necessary changes.
Her “Special Eye”
Not only is Rylee successful in her first-grade schoolwork, but she’s also participating in competitive gymnastics. The most difficult part is recognizing some of the minor issues from her condition that you wouldn’t necessarily think about – like needing more time to learn to ride a bike with training wheels because of her lack of depth perception. “She had a little more of a struggle on the balance beam, but she has compensated amazingly for that,” said Tara. “She is ranked the same level as everyone else now.”
Although she’s making great progress both in and outside of school, Rylee is quiet when it comes to talking about her condition – even with her mom. “I explained to her that she should be proud and I tell her to look at all the people she’s helped,” said Tara. “She’s still shy when you talk about her ‘special eye’. I ask her to describe how things look to her when she covers her good eye, ask her what she sees, but she just doesn’t like talking about it.”
Despite her condition, Rylee loves doing the same things every normal 6-year-old enjoys – even if it takes her a little more time.
By sharing her story, Rylee has made an impact on kids throughout the United States. People have reached out to Tara specifically to talk about how she recognized the issue and thank her for generating awareness around the topic of pediatric eye disease. “I had a childhood friend who reached out to me – her son was diagnosed with retinoblastoma and the only reason it was caught was because she saw the post about Rylee,” said Tara. “They caught it early enough to save his eye. He was just 9 or 10 months old and they were taking Christmas photos when they saw the glow keep popping up.”
But it’s not just friends and family who have reached out in gratitude. Even strangers have credited Tara and Rylee with helping them recognize an eye issue in their child. “One of my friends reached out to me and said someone she didn’t know from Arizona messaged her on Facebook and asked if she knew Rylee’s mom,” said Tara. “I reached out to her and found out she had been trying to contact me because her son was diagnosed with retinoblastoma. After the initial shock and everything got back to somewhat normal, she had vowed to seek me out and thank me for sharing my story. It’s been so rewarding to know that our story is reaching people.”
Taking the Journey with Dr. Calzada
Dr. Calzada has been a part of Rylee’s life since her diagnosis in 2014. Even though the process has been stressful at times, Rylee enjoys going to see him and Tara appreciates his ability to give her the information she needs to know in a way that’s easy for her to understand.
“He’s very good with Rylee,” she said. “He talks at her level. I like talking to him because he’s very clear. He’ll use the medical terms, but follows up with a clear definition I’ll understand. He takes a lot of pictures and uses those to make sure you know exactly what he’s talking about and see what he sees. He’s also doing constant research and keeps very up to date on technology, which is always impressive to me. He’s continually trying to increase his knowledge.”
Knowing she and Rylee can count on Dr. Calzada to provide them with the best information in simple terms has made coping with her Coats’ disease diagnosis easier from the beginning. With his guidance, Rylee will continue to flourish – and inspire and educate other parents along the way.
For more information about pediatric eye services at Baptist or the Baptist Regional Comprehensive Eye Center, please visit https://www.baptistonline.org/locations/childrens/pediatric-services.