When Taylin Fender was diagnosed with Steven Johnson Syndrome shortly before her 7th birthday, her life became a living nightmare that neither she nor her family could wake up from.
It’s a very rare skin disorder usually caused by a reaction to medication which starts with flu-like symptoms, followed by a painful rash that spreads and blisters.
Eventually the top layer of affected skin dies. In Taylin’s case it also caused blindness.
Four years, and a lot of healing later, Taylin’s life is almost back to normal. Despite her blindness she was a star student at Rogersville City School, making the Honor Roll every year.
Put the emphasis on “was” a star student at RCS because this past week Taylin started attending the Tennessee School for the Blind in Nashville.
On Sunday Taylin, along with her mother mother Jessica Fender, Pastor Charlie Gibson and former kindergarten teacher Carol Gibson made what will be the first of many trips for Taylin back and forth to Nashville, where she will attend school on weekdays.
Jessica said it was like sending her daughter off to college, except she’s only 11-year-old.
Carol Gibson, who is a member of the Rogersville City School Board of Education, described for her fellow board members this past Tuesday what attending this new school means to Taylin.
“Sunday I was worried that it would be emotional for all of us,” Mrs. Gibson said. “But, she was so excited to be there and we got to tour the school and see what all is going to be offered to her. It’s amazing. Music. Wrestling. I said, she don’t need that. There is no public school that can offer what they’re giving her there.”
Mrs. Gibson added, “She did not shed a tear. She wouldn’t even walk us to the door. I just want to thank you all. She’s been a blind student here for almost four years. To see those other children (in Nashville) it was very eye-opening for me and her mom. She’s going to excel there.”
Q&A with Taylin’s mom
Jessica Fender spoke to the Review earlier this week about their four year ordeal which began in March of 2018 while Taylin was a first grader at RCS. One day Taylin came home with Strep and was prescribed antibiotics.
Steven Johnson Syndrome is very rare, with only about 20,000 cases reported in the U.S. every year. They believe Taylin’s case was a reaction to that medication. Initially she got a rash, so they changed her antibiotic.
Jessica: By the next morning at 4 a.m. she was completely swollen. She couldn’t breath. Her skin was so blistered. I rushed her to the emergency room, and they couldn’t figure out what was wrong. Her oxygen was really low and they incubated her. A doctor came in and said, ‘I know what this is. She has Steven Johnson Syndrome. We’re going to have to send her to Children’s Hospital in Knoxville immediately’.
In Knoxville Jessica said they were trying to determine if it was Steven Johnson Syndrome. When they took off her bandages it took the skin off with it. Eventually they were transferred to the Children’s Hospital in Nashville where Taylin and Jessica lived for 27 days.
Jessica: We got to Nashville and sure enough they said it was Steven Johnson Syndrome. They put her back under sedation. Incubated her. Her throat was swollen shut. She was losing layers of her tongue. What Steven Johnson does is it burns your from the inside out. It’s just like you’re in a house fire except you get burnt from the inside out because your immune system is going against your body so hard that it’s fighting against itself.
Review: What were you thinking through this whole ordeal?
Jessica: I felt like I was going to lose my daughter. We prayed and prayed, and prayed, and prayed. We spent 27 days at the hospital. I had to move there with my 5-month-old baby. It was hard to be away from all my other kids. And, seeing what Taylin was suffering through was just really hard to do.”
Review: How did they treat Taylin?
Jessica: They did a surgery where they had to take all that skin off to stop it from spreading. They had to use a cadaver’s skin to cover her body. They had to shave her head. She looked totally different by the time she came home.
Review: When did you realize she was losing her sight?
Jessica: She kept her vision until like August of that year. It causes so much scar tissue throughout the body that, her eyes were so swollen she almost completely lost all vision. She can only see shadows. If you’re standing there she can only see a shadow of you. She can’t make your face out.
Review: Is there any hope that her vision can come back?
Jessica: They’re going to have to do a cornea surgery at some point. We’re going to wait until she gets a little bit older because Steven Johnson doesn’t really go away. She still has flare-ups. It’s been over four years now, and she still has episodes of it bothering her just a little bit, but it don’t get as extreme. They avoid the medicines that she had taken prior to keep it from flaring back up. There is a chance it could happen again.
Review: What was her recovery like when she came home?
Jessica: I had to stop working because she had so many doctor’s appointments, and I was having to take care of her just as if she was a small child again. She had to learn how to walk again. She had to learn how to eat again. She had to learn how to do everything again. It was like a nightmare you couldn’t wake up from.
Eventually Taylin got well enough to return to RCS which she attended until the end of this past school year. Despite her blindness, Taylin has consistently stayed on the honor roll. Jessica believes the lack of sight heightened her other senses and helped improve her focus and concentration.
Review: Why did you decide to send her to the Tennessee School for the Blind in Nashville?
Jessica: She needs to learn how to read braille. It’s been a challenge to want to send her there these past four years. I finally came to the decision that, she’s getting older and she need to know braille. In the future if she had something she needs to sign, or going to doctor’s appointment so she can read something instead of someone just trying to explain it to her. They’ll teach her how to take care of herself, and how live out her life without having to rely on other people to do basic things for her.
Although Jessica and the Gibsons took Taytlin to school for her first day this past Sunday, from now on Taylin will take a bus back and forth each week. The bus will take her to Nashville on Sunday, and bring her back home on Friday.
Jessica: They can try to teach her here, but they don’t have enough one-on-one time to teach her certain things. (The Nashville school) has special ways of teaching certain things to her. She can go all the way through college at that school, so that’s a pretty cool thing if she decides she wants to keep going there.
Review: What did Taylin think about going to school in Nashville?
Jessica: She really likes it. It’s hard. It’s kind of like sending my kid away to college when she’s just 11.
Review: Describe what this journey with Taylin has been like over the past four years?
Jessica: You ask God why this is happening to your child. I would just cry all the time and be overwhelmed. She takes more medicine than most adults have to take. She’s been through eight or nine different surgeries on her eyelids trying to get her eyes to open back up. She’s so light sensitive, for the longest time she had to wear the darkest sunglasses we could find. We’ve probably been back and forth to Nashville 30 times in four years.
Review: Have things gotten better?
Jessica: Things are much better for her. She went from a perfectly healthy child, running and playing and everything; to a totally disabled child who was unable to do anything whatsoever. It got to the point she was scared to eat. She was scared to drink. She didn’t want to do anything and it depressed her really bad, and gave her really bad anxiety. Now she goes and runs and plays, and does what everybody else does, like she was before. She just doesn’t have her vision now.
Jessica said she can’t begin to thank all of the people who have helped Taylin and their family over the past four years. There have been a lot of prayers and assistance paying the bills when she had to stop working.
Jessica: There are so many people who helped us, and prayed, and did so many different things. I couldn’t even begin to name them all.