Baylie gives family Thanksgiving joy
By Brandy Nance (Contact)
Originally published 09:25 a.m., November 17, 2007
Updated 09:25 a.m., November 17, 2007
With Thanksgiving fast approaching, the family of Baylie Newcomb has a lot to be thankful for. Baylie, who was born 18 months ago with a rare genetic disease, has defied the odds.
Baylie was born at Newman Regional Health to Julie and Don Newcomb II in April 2006. After birth, physical signs that something was wrong included extra digits on Baylie’s hands and feet and her very high palate. She was taken to Children’s Mercy Hospital in Kansas City, where she underwent genetic testing. Her condition is so rare that there’s not a name for it and no other cases to compare it to.
After being diagnosed with Partial Trisomy 4p/Partial Trisomy 13q, both chromosomal disorders, doctors gave Baylie a year to live. Eighteen months later, Baylie has defied the odds. She’s home with her mother, father and 3 1/2-year-old twin sisters, Penelope and Chloe.
Julie Newcomb spoke about Baylie’s progress the family’s living room as Penelope and Chloe played princess and Baylie quietly slept, the hum of her ventilator in the background.
Baylie was off oxygen for a period of time but had to be put back on it recently.
“She’s gotten stronger,” Julie Newcomb said, as she observed Physical Therapist Dacia Hightower check Baylie’s monitors. “She’s doing awesome with PT.”
Among the activities involved in a typical day for Baylie are five feedings, physical therapy, tummy time, time in the Bumbo chair, bath time and reading time.
Baylie has been rolling back and forth and she gets her first wheelchair next month, Newcomb said. The wheelchair is custom-made for Baylie and it will help her with sitting correctly.
“We’re very excited for that,” Newcomb said with a smile as she glanced at the twins dancing around the room.
Baylie has a mouthful of teeth and has started talking. She can say “da da,” and smiles as she does it, Newcomb said.
“She stalks (Dad) everywhere he goes,” she said. “It’s very cute to see them interact.”
When Baylie awoke Friday morning, she awoke with a smile — a smile her mother says Baylie sports most of the time.
“It’s hard to know when she’s sick,” Newcomb said, “because she sits there and smiles and laughs.”
The family does have one wish for the holiday season — a new van that can hold the family as well as Baylie’s medical equipment needed for travel. The family had a van, but it isn’t reliable. A fund at Lyon County State Bank has been set up under “The Baylie Newcomb Fund,” 2326 Industrial, Suite 400 No. 273, Emporia, KS 66801. Donations are tax
deductible.
* To read updates on Baylie go to http://www.caringbridge.org/visit/baylie.
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Posted by hottopics (anonymous) on November 17, 2007 at 11 a.m. (Suggest removal)
Way to go Baylie. She is a delight in every way.
Posted by hjcary (anonymous) on November 17, 2007 at 10:29 p.m. (Suggest removal)
My very first pediatric home care case was with a little boy with Trisomy 18 and his parents were told he would not live the first year and he is now I think he is around 13yrs old. His mom would go to the dr. and they would ask her what she thought they had never seen a trisomy 18 child live past a year so they did not know what to tell the mom to expect. After caring for him 10yrs ago I went on to work at Children's hospital and was at the zoo one day years later and saw him on a school field trip and asked one of the teachers is this boys name Jonathan and they said yes and I was amazed. Good luck you have a long road ahead but Baylie looks so happy. May God bless you as you care for her.
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