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Posted February 27, 2014 | Leave a comment
Hearing first, then her first steps
Strasburg family focuses on overcoming their child's rare genetic condition
By Katie Demeria
STRASBURG -- In a few months, 16-month-old Baylee Scott will be able to hear her mother's voice.
Baylee will receive cochlear implants on March 19, and four to six weeks later, once the swelling goes down, she will be able to hear.
When Baylee's mother, Jordin Scott, 21 of Strasburg, was asked what she is most excited to tell her daughter, she replied, "that I love her."
Baylee was born with CHARGE syndrome, a rare genetic condition characterized by a series of distinctive birth defects.
CHARGE is an acronym derived from the first letters of some of those defects: Coloboma of the eyes, heart defects, atresia of the choanae, retardation, genital underdevelopment, and ear abnormalities.
Baylee is profoundly deaf, has no tibia bones in her legs and has undergone multiple heart surgeries.
Only one in about 10,000 births result in a CHARGE baby, Mrs. Scott said.
"We were prepared for her," she said. "They told me, when I was 20 weeks, that she wouldn't live more than an hour after she was born."
Baylee's physicians thought she had short rib-polydactyly syndrome, only realizing she had CHARGE after her birth.
Mrs. Scott and her husband Damion Scott, 22, have adjusted their lives to meet Baylee's needs. Mrs. Scott said they are used to taking their daughter to multiple doctor appointments.
"She doesn't like strangers, I think because of the doctors," Mrs. Scott said.
With the prospect of resolving Baylee's deafness in the near future, Mrs. Scott said she and her husband are now focusing on figuring out a way for the little girl to be able to walk.
Without tibia bones in her legs, Baylee has no hope of either crawling or walking. A local doctor performed surgery on her legs, but the procedure, according to Mrs. Scott, made little difference.
"We thought she would be walking by now, but she just has the braces, it hasn't changed anything," she said.
After she was told the surgery would not allow Baylee to walk, Mrs. Scott took the initiative to send Baylee's X-rays to a specialist in Florida.
"I'm part of a really great Facebook group, where a bunch of CHARGE parents post pictures and updates about their kids' progress," she said.
It was through this community that she met a woman from the United Kingdom. with a CHARGE daughter as well. She has been in Florida for six months while her child undergoes numerous surgeries on her legs.
"I sent the X-rays down there because I was hoping he would say Bay would be OK, that she'd be able to walk," Mrs. Scott said. "But he told us that she will either need to start treatment or we'd have to amputate."
The only option, she said, is to pursue treatment in Florida.
"His name is Dr. Paley, and he's worked with CHARGE babies before," she said. "And not many people around here have, so it would make me feel good to know that he has experience with it."
Mrs. Scott said she and her husband are prepared to spend at least six months in Florida, as the adjustments to Baylee's legs will require several surgeries. And the cost for the first procedure, which involves lengthening her legs, will be at least $95,000.
"Our insurance won't cover it," Mrs. Scott said. "They said it's considered cosmetic."
The family has a consultation set up for June, and the money needs to be paid in full two weeks prior to the appointment.
"I'm trying not to worry too much about it," Mrs. Scott said. "We'll have to start working on fundraising soon, and there is so much to think about."
Rita's Italian Ice in Winchester plans to sponsor Baylee and making her a poster child, hopefully encouraging fundraising events, Mrs. Scott said.
The family will also have to work on raising money to afford making the move to Florida on top of the new medical costs.
"It'll be worth it, though, because this is her only chance to walk," Mrs. Scott said.
In the meantime, Mrs. Scott said doctors will continue monitoring Baylee's heart, as it has not been doing well lately.
But those health obstacles are just part of daily life for Mrs. Scott, her husband and Baylee. Taking them in stride, Mrs. Scott said she is very excited for Baylee's next big achievement: being able to hear and, eventually, being able to talk.
"They say she'll be 16-months behind on talking," Mrs. Scott said. "But that doesn't matter, even though she's going to be behind, at least she'll be able to hear us."
Those interested in learning more about Baylee or becoming involved in fundraising can visit her Facebook group at http://www.facebook.com/TeamBaylee.
Contact staff writer Katie Demeria at 540-465-5137 ext. 155, or firstname.lastname@example.org
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