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The blood can shoot two feet away or puddle around her in a car seat. Other times, the leg just bleeds a little.
The bleeding doesn't necessarily happen because Wile's daughter, Layla Walton, fell or bumped herself. It can just happen.
Layla has KTS, Klippel-Trenaunay Syndrome, a very rare genetic disorder that causes blood vessels to develop abnormally. Only 1 in 30,000 babies gets KTS.
Layla has an overabundance of blood vessels, and many don't work properly to return the blood to her heart. The blood pools in the vessels, causing the bleeding and extreme pain at night.
The blood vessels that cover the outside of Layla's left leg are very visible — "My daughter's leg looks like a purple mass with blueberries on it," Wile wrote in her blog.
People stare, Wile said, which used to bother her more than it does now. She's more concerned now about educating people about KTS — a disease without a cure — and eventually raising money to help families struggling with the disease.
In spite of having KTS, Layla is usually smiling, Wile said.
"She loves to cuddle. She loves to hug and kiss. She says 'hi' to everyone. She just has a personality that (makes) people fall in love with her," Wile said.Layla lives in Millersville with her mom and dad, Brandon Walton, and Wile's two sons, Brandon and Seth Wile.
"They treat her like she's a princess, and she knows it," Wile said of her sons.
Walton's parents, who live in Willow Street, have been very supportive, Wile said.
"I think more than anything, it's drawn everybody closer together," Walton, who is a plumber, said.
Perhaps it's Layla's personality and the love of her family that help her stay happy and carefree between the bleeding and the pain.
Blood pools in Layla's veins all day while she's active and puts tremendous pressure on her leg at night.
She has not yet slept through the night, Wile said, because of the pain.
Layla pulls at her leg, kicks at it and sometimes tries to slap or grab and squeeze it, Wile said. When she's in really bad pain, she will just straighten her spine, throw her head back and scream.
(429) (31) (3)"It's horrible, because she'll scream and scream and scream," Wile said. That's when morphine is the only medicine that can tame the pain.
The bleeding itself isn't always painful for Layla. Sometimes she cries; sometimes she doesn't.
It does mean that her parents have to be vigilant wherever she goes. As soon as she starts to bleed, they apply pressure to get it stopped.
Sometimes the bleed is small and a Band-Aid will be enough. More often, the bleed is big enough that it needs to be covered with a silk gauze.
The gauze isn't supposed to stick, Wile said, but sometimes it does anyway, aggravating the problem.
"One time, she had it wrapped for three weeks because every time you'd unwrap it, it would open up again," Wile said.
Layla's parents have learned that they need to pay attention to how much she bleeds in a week's time because she can lose too much blood.
Recently Layla had to have a blood transfusion because her hemoglobin count had dropped so low it was potentially dangerous to her heart.
In mid-May she went to the Vascular Anomalies Center at the Children's Hospital Boston for venography and sclerotherapy, surgical procedures that are supposed to stop the bleeding.
In this procedure, Dr. Ahmad Alomari, an interventional radiologist, first identified the abnormal veins and then injected a toxic solution to destroy them.
Often multiple procedures are needed "to achieve and maintain reasonable control," Alomari wrote in an e-mail. Sometimes the improvements might only last a short time; others last for years.
Two weeks after the surgery, Layla has had no major bleeding, her mother said.
Layla's case is considered moderate in the range of KTS patients, Alomari wrote. Despite the early bleeding she is encountering, Alomari added, Layla still has some favorable findings, "such as the … size of her feet."
Alomari is referring to another symptom of KTS in which the affected limb can be bigger around and a lot longer than the matching limb.
Layla's affected leg is bigger than her other, her mother said, and Layla already walks with a slight limp. Time will tell how big the differential will be.
Some adolescents have orthopedic surgery to stop the leg from growing, Wile said.
"Eve has very difficult decisions to make," said Layla's family doctor, Dr. Jon Lepley of Highlands Family Practice in Manheim Township.
Because KTS is so rare, she doesn't have much research on which to base her decisions, he said.
Wile credits Lepley for helping her find answers that are available and for directing her to the experts. She has also consulted with Dr. David Driscoll at Mayo Clinic and, ultimately, Alomari, both of whom have treated multiple KTS patients.
Ongoing physical issues aren't the only challenges facing Layla and her family.
Wile said she worries about how other children will treat Layla when she gets to school. She wonders if there will be a boyfriend who can deal with the disease.
Most of all, she wants Layla to be comfortable with herself.
"I don't want her to hold herself back from anything. If she wants to try dance class, then we'll try and if it doesn't work or it is painful … she can decide from there if it works or not."
Wile, who is a survivor of domestic violence, a single mother for eight years and an aerobics instructor, is setting the example for her daughter.
She is shedding the pain of the past and using the pain of her daughter's diagnosis to motivate herself to fulfill her own dream of creating a fitness video.
"Life is short and precious, and if I learned anything from this whole thing, it is just how precious life truly is," Wile said.
"Here I am grabbing life by the horns," Wile wrote on her blog.
Lepley is optimistic about Layla's future.
"She is in many ways a normal child," he said. "I don't have any reason to believe she won't have a good quality of life. She's surrounded by such good people and people care about her."
For updates on Layla's progress, visit www.joinevesjourney.com
E-mail: lespenshade@lnpnews.com
