Fighting for life since birth, Peyton has 'overcome everything they told us she wouldn’t overcome'
BY ROGER MOONEY
OKEECHOBEE – Peyton Williams entered this world with a damaged heart, a damaged airway and hardly any hope from doctors who examined her the day she was born. They told her mother her baby wouldn’t survive her first 24 hours. Then she was told Peyton wouldn’t live to her first birthday.
Peyton celebrated her 12th birthday two days before Christmas.
She has scars on her chest from three open heart surgeries, the first when she was six days old, but no visible marks on her throat from the nine years she wore a tracheal tube. Her mom, Le-Ann Williams, said Peyton has endured 98 surgeries and spent more than half her life in hospitals.
“She’s a walking miracle,” Le-Ann said.
Doctors said Peyton wouldn’t walk or talk or run. Peyton does all those things, and she also swims, fishes, camps, cooks, plays the violin, and makes her own videos that she posts on YouTube.
“She has overcome everything they told us she wouldn’t overcome,” Le-Ann said.
It wouldn’t have been possible without some help from Florida’s Family Empowerment Scholarship for Students with Unique Abilities (FES-UA) managed by Step Up For Students.
Peyton was born with DiGeorge syndrome (22q11.2 deletion syndrome), which means she is missing a part of chromosome 22. In Peyton’s case, the syndrome caused a heart defect (pulmonary valve stenosis in all four chambers) and a weakened immune system. She is also on the autism spectrum, has attention-deficit/hyperactivity disorder (ADHD), and obsessive-compulsive disorder (OCD). She has periodic fever syndrome, where her body temperature will spike as high as 104 degrees for no known reason.
Peyton was born with false vocal cords. She can talk but barely above a whisper.
Her damaged airway required 34 surgeries over a five-year period to complete the reconstruction. Most of the surgeries took place at a hospital in Cincinnati.
Peyton suffers from insomnia caused by all those nights in hospitals, mostly at the Nicklaus Children’s Hospital in Miami, which is 150 miles from their Okeechobee home. Le-Ann has been diagnosed with clinical insomnia because she’s constantly checking Peyton throughout the night to see if she’s breathing.
Peyton sees nine specialists.
“Other than that,” Le-Ann said, “Peyton’s a happy-go-lucky kid.”
Beads of Courage is a nonprofit in Tucson, AZ, that gives strings of beads to children around the world battling serious illnesses. Each bead is a symbol of something a child has endured, from a blood test to a life-saving operation.
“Anything medical,” Le-Ann said. “Every time she’s been poked by a needle. Every time she’s received intravenous.
Peyton’s string stretches from the stop sign outside the house to the end of the street – a total of four houses.
“Her life has been a struggle,” said Peyton’s teacher, Cassandra Keith, “but she is a real fighter.”
When Peyton was 6, a therapist told Le-Ann about an education savings account (ESA) that would help pay for Peyton’s therapies and other expenses like educational products and curriculum. The ESA, now known as the Family Empowerment Scholarship for Students with Unique Abilities (FES-UA), has been a game-changer for Le-Ann.
“It has helped us in so many ways,” she said.
The scholarship pays for Peyton’s sensory toys, electronics like computers and cameras and music therapy. That’s how Peyton learned to play the violin.
The biggest benefit of the scholarship is it pays for Peyton’s teacher.
Peyton is classified as hospital homebound, which means she cannot attend school on a regular basis because of her health.
Keith is a Special Education Resource Specialist for Compliance of IEPs for the Okeechobee County School District. She has been in education for 34 years and has extensive experience teaching children with special needs.
It began in 2013 with a chance meeting at the Backyard BBQ restaurant in Okeechobee. Keith saw Peyton, who was wearing a tracheal tube, and struck up a conversation with Le-Ann. Soon, Peyton was evaluated by the school district. Because of her immunity issues, it was decided Peyton would receive homebound services and that Keith would be her teacher.
Keith became an FES-UA provider so the scholarship would pay for her services. She has been Peyton’s lone teacher since then.
“This Scholarship has been a blessing for Peyton,” Le-Ann said. “We’re very thankful that we’re able to provide the education she needs that our school systems wouldn’t be able to due to her care.”
Peyton meets with Keith for four hours three to four times a week nearly year-round. They meet at a local park, the library, Keith’s home or office.
“She wants to learn. She tries. She really does,” Keith said. “We just work with her and keep working. We don’t worry about the medical and when the medical problems arise, we work through them.”
A week before Thanksgiving, Peyton sat at the living room coffee table, keenly focused on the task at hand, which was to color a leaf that arrived moments earlier in box from Doodle Crate, an educational kit covered by the FES-UA.
The leaf was part of an insect sculpture, a perch for the centerpiece of the set, which is a beetle. But Peyton had other plans for the leaf. With the colored pens provided, she outlined the edge in red and blue before drawing a pink heart in the center. Then she hung the leaf on the Christmas tree that already stood in the corner of the room.
“She’s brought a lot of joy to our house. A lot,” said Le-Ann, who watched from a nearby sofa. “Between Peyton and work and doctors, it’s been a whirlwind, but I wouldn’t change it for anything.”
Le-Ann works as a psychiatry assistant while studying for a degree in forensic psychology. She is divorced from Peyton’s dad, but they remain at the head of Team Peyton, which consists of Peyton’s sister and brother, stepsisters and stepbrothers, her stepmom, and Le-Ann’s boyfriend, as well as grandparents, aunts, and uncles.
Hanging above a door in the living room are two photos of Peyton, taken when she was only days old. She lies in a hospital bed while a network of wires and tubes monitor her health. Between the two photos, the words “love” and “joy” form a cross.
“It’s a reminder of everything she’s been through,” Le-Ann said. “She has a baby book, too. Well, not that it’s a normal baby book. It has all of her (medical) stuff in it. She has a little photo album she keeps that she looks through. And when she gets down and she’s like, ‘I’m done! I’m done with surgeries,’ she opens it up and we’re like, ‘Look at how far you came.’ It’s a reminder of how little she was and how far she’s come over all these years.”
Peyton had her third open-heart surgery last January to replace the valves. Those valves will last only three to four years. The heart doctor told Le-Ann that Peyton probably would not survive a fourth heart surgery.
Le-Ann fights just as hard as Peyton. In a video produced by Nicklaus Children’s Hospital when Peyton had her tracheal tube removed, Le-Ann said the key to fighting is never to lose hope.
“Keep fighting no matter what,” Le-Ann said in the video. “There’s always an answer.”
So, Le-Ann will take Peyton to the Arnold Palmer Hospital for Children in Orlando for another opinion from anther heart surgeon.
“I’m optimistic that she’ll surpass what the doctors said, just like she’s done in the past,” Le-Ann said. “I’m always looking for new opinions to make sure we have her diagnosed properly.”
Meanwhile, a camping trip to Arcadia is coming up, and this summer Le-Ann plans to take Peyton and her brothers and sisters on a camping tour of every state between Florida and Pennsylvania.
Peyton will continue to swim and take pictures and post videos to YouTube. She’ll meet with her doctors. She’ll study with Keith.
“We try to let her live as much of a normal life as possible,” Le-Ann said. “We let her experience things, enjoy life. We’ve been told by doctors that she wouldn’t live long. If that day comes, we don’t want to regret that we held her back.”
Roger Mooney, manager, communications, can be reached at firstname.lastname@example.org.