Parents seek help to afford last-ditch effort at feeding aversion cure
By Kevin Spradlin
PeeDeePost.com
* Make a donation to Kallen Heath
It’s a mother’s worst nightmare come true. Brandi Heath sees what everyone else sees when looking at Kallen, her 3-year-old son.
“When you look at Kallen, he looks normal,” Heath said. “It’s the things that you don’t see. He looks great on the outside. Inside, he’s a wreck and they don’t know why.”
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Kallen Heath, 3, needs help to teach his body how to eat. The intensive feeding program is a costly one, however, and the family is seeking the public’s help.
Kallen has been diagnosed with Dysautonomia, ” collection of conditions associated with dysfunction of the Autonomic Nervous System,” according to the Dysauonomia Project. For Kallen, the long name has a very real — and very immediate — consequence.
He can’t eat. Or, more accurately, his body doesn’t know it needs food. And that’s a problem. His feeding aversion is causing him to lose weight and take in only 200 calories a day. If it weren’t for a hospital-grade formula, Kallen would be in far worse shape.
His primary doctor is Dr. Steven Litchman at UNC Children’s Hospital in Chapl Hill. Heath said that Kallen “is such a complicated case to him. He’s a puzzle he can’t figure out. He doesn’t know what else to do.”
The next step is to send Kallen to Virginia. At Children’s Hospital of Richmond at VCU in Richmond, Kallen is to undergo an eight-week intensive behavioral feeding program. There, Kallen is expected to be under the care of eight doctors, including a psychiatrist, a gastroenterologist, a feeding therapist, an occupational therapist, a physical therapist and a recreational therapist, along with his regular pediatrician.
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Brian and Brandi Heath are working to provide for Emma, 6, and Kallen, 3. But they’ve reached an unusual obstacle and are looking to the community for help.
The goal is simple: From 8 a.m. to 2 p.m. each day, the main goal will be to increase Kallen’s oral solid intake and increase the variety of foods he’ll eat. The problem is that for the Heath family — she’s a secretary for an Aberdeen tire and auto shop, husband Brian is a service dispatcher for a regional office supply store. The couple has one other child, 6-year-old Emma.
Brandi Heath said she and Kallen are scheduled to leave Richmond County for Richmond, Va., on July 20. They have lodging at the Ronald McDonald House — which asks for a $15 per night donation, but that’s not required.
Kallen is dually covered under personal health insurance and North Carolina Medicaid. But, Heath said, the state of Virginia doesn’t accept North Carolina Medicaid. The 56-day program — at $430 a day — comes to slightly more than $24,000.
“We know we have 18 days covered,” Heath said of funds available. “If they accepted our double coverage … we wouldn’t have a problem at all. We’re trying to buy 12 days.”
The program is ideally over 56 days, but “I have a feeling we’re gonna run out of money before then,” Heath said, “and we’re gonna have to come home.”
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Along with applying for a grant of up to $5,000 — that would pay for another 11 days of treatment — Heath is hopeful the community adopts the “it takes a village” approach and considers chipping in. A fundraiser has been scheduled to run from noon to 7 p.m. on Sunday, July 12 at Ellerbe Lions Club Park.
Several area businesses have donated to help make the event a success and Jacked Up Hot Rod will play from 3 p.m. to 6 p.m. In addition, a local couple has donated two tickets to the Carolina Panthers’ home opener on Sept. 20 against the Houston Texans. Raffle tickets are $1 each or six for $5. The drawing will be held at 6 p.m. July 12. One does not need to be present to win.
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For more information or to purchase raffle tickets, call Heath at 910-334-2977 or send an email to brandiaheath@gmail.com.
