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Family raises funds for daughter's surgery

2014_02_21_Charge_Syndrome2.jpg
Jordin Scott of Strasburg holds her daughter Baylee. Baylee has CHARGE syndrome. Rich Cooley/Daily file (Buy photo)


By Katie Demeria

Jordin Scott, 21, of Strasburg, was hoping her 18-month-old daughter Baylee Scott would be able to hear her voice by now.

Baylee is profoundly deaf because she has CHARGE syndrome, which is a rare genetic condition. It is characterized by a series of distinctive birth defects: Colboma of the eyes, heart defects, atresia of the choanae, retardation, genital underdevelopment, and ear abnormalities.

The term CHARGE is an acronym derived from the first letters of those defects.

Earlier this week, Baylee's cochlear implants were activated. They were surgically added to her ears a few weeks ago and, now that the healing process is complete in her right ear, Scott and her family were expecting Baylee to be able to hear them.

Baylee has not yet reacted to the implants, though.

"She isn't responding to it, so we're just kind of waiting to see if she'll have a response sometime soon," Scott said.

The implant in Baylee's left ear cannot yet be activated, Scott said, because it has not healed. There is still hope that the implant in her right ear will work, and that her left ear will be more successful.

This is just one setback for Baylee and her family, Scott said, and they are hopeful that she will still be able to hear.

The next major battle for Baylee is helping her walk. She was born without tibia bones in her legs and through her research Scott found a doctor able to perform the necessary surgery in Florida.

Without the surgery, Baylee's legs may need to be amputated. Scott said their insurance company will not cover the cost because it is considered a cosmetic procedure.

Scott and her family, including her mother Teresa Watson, have been working to raise funds for both Baylee's surgery and a consultation with the doctor in June.

"It's actually going wonderfully," Watson said. "We have gotten so much support from the community."

The family will have a spaghetti dinner and silent auction from 5 p.m. to 7 p.m. Saturday at the Winchester Church of God. Olive Garden is donating salad and breadsticks to the event, and various local businesses donated items and gift cards to auction off.

The family will not know the cost of the surgery itself until the consultation. Scott said it could be at least $95,000.

Watson said the consultation may reveal that the cost could be even more, possibly double.

"The amount we have to raise, it's been a bit of a shock," Watson said. "You know it's great when you have a bake sale to make enough money for a few things, but when it comes to a surgery like this, it's serious."

"But it will get done," she continued. "We're not going to let Baylee's legs be amputated, we will do everything we can."

Watson said Baylee has been through a great deal already. She has major heart problems, and during her second major heart surgery she simultaneously went into cardiac arrest and had a seizure.

"She came back from that," Watson said. "She's pulled through every single thing. There's a reason she's here. She's an amazing little girl."

Plates cost $8 at the spaghetti dinner, and it is open to the public. Those interested in learning more about Baylee or becoming involved in fundraising can visit her Facebook group at www.facebook.com/TeamBaylee.

Contact staff writer Katie Demeria at 540-465-5137 ext. 155, or kdemeria@nvdaily.com


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