"When you look at her, how precious she is, you just can't help but feel joy," Southern Council of Higher Degree of Moose Fraternity President BJ Keyt said while watching Chloe play with a Spinoza Bear the group presented her at the YMCA Wednesday evening. "There is no greater gift than love, which is why we wanted to give Chloe this special bear."
After learning of Chloe's medical condition, Keyt said she was the clear choice for committee members of the community service project's quarterly distribution of the bears.
A Spinoza Bear is a therapeutic tool disguised as a cuddly teddy bear.
It is designed to provide sensory stimulation and companionship to people in need of affection, by using specialized CDs containing stories of encouragement, relaxation, stress management and music played on a high quality CD player hidden inside.
"Chloe's going to love this," Kahleah Lawler said about her daughter's new gift. "Although she's two-years old, she's really only developmentally at six- to nine-months old. This will give her something more to interact with."
Born on Aug. 26, 2005, at Terre Haute Union Hospital, doctors told Kahleah and her husband, Chris, that Chloe was diagnosed with a bi-lateral cleft lip, suffered from some development problems while in the womb and she would have to stay in the neonatal intensive care unit.
Two weeks later, while at a consultation at the facial-cranial clinic at Riley Children's Hospital of Indianapolis, a doctor diagnosed Chloe with a rare disorder, holoprosencephaly.
Holoprosencephaly (HPE) is a disorder caused by the failure of a baby's embryonic forebrain to sufficiently divide into two sections during the fifth and sixth weeks of pregnancy, resulting in a single-lobed brain structure that can create severe skull and facial defects.
But that wasn't the end of the medical problems.
Chloe was also diagnosed with diabetes insipidus, seizure disorder, an under-developed pituitary gland, hypothyrodism and acid reflux. And, because of the facial deformity, Kahleah said Chloe is fed through a tube.
"She's unable to eat, but loves to chew, taste foods and feel things in her mouth," Kahleah said. "Liquids scare her a little bit because she chokes on them. Chloe likes to chew on soft furry things, so this bear is going to get slobbered on a lot."
Undergoing medical treatment and therapy almost on a daily basis, Chloe is unable to walk and will learn to use a wheelchair in a few months, but she loves music and has her own unique way of dancing.
"She's very music oriented and loves to dance," Kahleah said. "Although Chloe's unable to understand some things, she knows her daddy's voice."
Chris Lawler, who called during the presentation to talk to Chloe and her six-and-a-half year-old sister Kylee, is currently deployed overseas as a Technical Sergeant with the Indiana Air National Guard based in Terre Haute Hulman Field.
"We weren't sure that Chloe would know his voice at first, but when he came home the last time her eyes just lit up and she was so excited," Kahleah said. "He calls every night to check up on us."
Kahleah admits that life is hectic with the two girls being so active and working full-time at Clay County Head Start as an assistant teacher, but she is very grateful for her family's help, especially with another little baby girl on the way in June.
HPE can be a genetically inherited, but Kahleah says there is no evidence of Chloe's case being genetic and remains optimistic about her current pregnancy.
"We will have to some upgrades on the house as it is not handicap friendly at this time," she said. "With all the daily challenges we face with Chloe's conditions, she is a joy to behold, and we thank God every day for her."
To learn more about Holoprosencephaly (HPE), log on to http://www.ninds.nih.gov/disorders/holop....
Fraternity President BJ Keyt said the Southern Council of Higher Degree of Moose Fraternity would accept nominations from anyone in the community about "any deserving person, of any age, that needs a little tender loving care."
To nominate someone to receive a Spinoza Bear, contact either the Brazil or Greencastle Moose Lodge and request to speak with Keyt.