A way of life

Kristie and Chuck Carnett recently celebrated their daughter Faith's fifth birthday. Faith is a child with an undiagnosed genetic disorder. [Click to enlarge]

Faith Carnett celebrated her fifth birthday early this February. But, unlike most 5-year-olds, Faith battles a rare genetic disorder that is undiagnosed, but is akin to cerebral palsy. The duties of living with a child in that condition are a daily way of life for Faith's parents, Kristie and Chuck.

Kristie said that Faith has seen a genetic counselor annually, but that they have been unable to diagnose what disorder she has.

"There are many children out there with disorders who have gone undiagnosed," Kristie explained.

She said that genetic counselors keep checking Faith every year hoping to find a clue that would give a diagnosis. One thing Faith's parents did learn was that whatever the diagnosis, it was most likely caused by the combination of their chromosomes. Kristie said that genetic counselors believe she and her husband have a one in four chance of having another child with Faith's condition.

The couple has decided not to have any more children. Kristie said the decision was not a hard one to make.

"To me, it's not really a hard decision, because I want to devote 100 percent of my time to Faith, and with another child, some of that time would be taken away," Kristie said. "Even if we had a child born without a condition, I wouldn't want time to be taken away from Faith."

Kristie said there are challenges in raising any child, and Faith is no different.

"We have a daily routine that we follow," Kristie said. "But nothing is really challenging. We have it pretty good. I think we've been blessed."

Kristie and Chuck said that Faith is a busy little girl.

"I spend all day with Faith, but in the morning I take her to physical therapy and speech therapy. Usually we have the afternoons to ourselves," Kristie said.

The Carnett family lives in Holcomb, Mo. Kristie said that she drives her daughter to physical therapy in Kennett three days a week, and the Early Childhood Center in Malden, Mo. comes to their house for speech therapy two days a week and for school one day a week.

"It's a pretty busy schedule for us," Kristie said. "But we have no problem with it."

She said that Faith's speech therapist has taught her the names of colors and the names of certain body parts. She communicates through a device called an alpha talker. The device features a series of symbols on a small computer screen that, once pressed, a recorded message plays. For example, if Faith presses a picture of a cup, a voice will say, "Can I have something to drink, please?"

The alpha talker also helps Faith in a teaching capacity. Kristie said that pictures of what she is learning can be put on the screen for her to identify.

"Right now, she doesn't know all of them; she's still learning," she said.

As for physical therapy, Kristie said that Faith goes through exercises that stretch her muscles both while she's standing and sitting.

In August, Faith will be old enough to go to school. But, Kristie said, she and Chuck made the decision to home school her.

"I'm not so much worried about having to home school her, I'm more worried about her getting sick if she goes to school," she said.

Kristie said that Faith has many hobbies. She likes to be read to, color and paint.

"And she loves Tigger," Kristie said, referring to the Winnie the Pooh character.

On Faith's birthday, the staff at the Dunklin County Women, Infants and Children office threw a party for her. The staff at WIC have been dealing with Faith all of her life. Now that Faith has turned 5-years-old, she is no longer eligible to receive assistance from the program.

"We're really going to miss Faith," said Casey Smart, nutritionist at WIC. "She's a really special girl to all of us, and it's sad to see her go. We consider here a part of the family."

Smart said that Faith is one of only a few WIC clients with special needs. Most of the children she said she deals with are either under or overweight.

"Definitely our only client in Dunklin County with special needs like that," she said.

Smart said that Faith has been on Pediasure, a nutritional supplement for children, since her first birthday.

Kristie said that she appreciates the support the organization has given her and her family.

"They're very good to us. They've been supportive emotionally," she said. "We had such a good time at the party."

Kristie said that Faith battles occasional seizures but is a happy girl. "We've met all the challenges that we have, and we get all the help and support we need," Kristie said.