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Chattanooga: Rare illness causes strife

By: Emily Bregel
(Contact)

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Michael Carr

In 2006, Tara Duncan’s life seemed a happy-ending tale of a single mother who went from homeless to homeowner.

After fleeing an abusive relationship two years earlier, falling into bankruptcy and living for weeks in her car and under the Walnut Street Bridge with her 4-year-old son, Ms. Duncan became a homeowner with help from the Chattanooga Community Kitchen and Habitat for Humanity.

“I was just determined to make a better life for me and my son,” she said.

But in the past year, her son, Jeremiah Fuget, now 6, has been diagnosed with a rare gastrointestinal birth defect that needs treatment, upending their journey from the streets.

Compelled to stay home from work to take care of Jeremiah, who now has a colostomy bag, Ms. Duncan has been living on no income and is falling behind on her mortgage payments, she said. She has missed so much work she faces termination from her job at Moccasin Bend Mental Health Institute, where she has worked for 12 years as a psychiatric technician. She is currently on food stamps, though she chafes at being on government assistance.

“My life has changed,” she said. “I’ve always been a go-getter and independent.”

Kathy Long, Ms. Duncan’s former caseworker with Chattanooga Community Kitchen’s housing assistance program, says Ms. Duncan isn’t the kind of person who asks for charity, but she needs help.

“I think she pulled herself out of (homelessness) and then it just goes to show you that overnight, medical stuff can knock you back,” Ms. Long said. “I’m hoping she can get some assistance (to) help her get back on her feet so she doesn’t lose her house.”

Ms. Long said her own efforts to get support from local charities have come up empty since nonprofits’ donations have been hit hard by the economic downturn.

“Everybody’s tapped,” she said. “I’m just really at a loss as to any kind of help she could get.”

“CLIMBING THE MOUNTAIN”

On one of the first cool days of fall, sitting on the porch of her green-shuttered Highland Park home, Ms. Duncan is armed with folders full of correspondence between herself and elementary school officials, her employer and her insurers.

Determined to understand her situation as completely as possible, she has pamphlets from advocates for the disabled about the rights of a child with disabling medical conditions. She’s researched her son’s conditions extensively and wields medical terminology like she diagnosed him herself.

Jeremiah, who is covered under TennCare, the state’s managed Medicaid program, has neuronal intestinal dysplasia, an extremely rare birth defect of the nerves in the intestine, leading to either diarrhea or, in Jeremiah’s case, constipation, said Dr. Michael Carr, a pediatric surgeon with University Surgical Associates who is seeing Jeremiah.

If his condition cannot be treated successfully, Jeremiah could have a colostomy for his entire life, Dr. Carr said.

Dr. Carr has recommended that Jeremiah travel to Columbus, Ohio, in December to see a specialist who is one of the few in the country to have studied the disease. Ms. Duncan is still unsure about how she can pay to get her son there.

“I’m counting my pennies now. I don’t have a dollar to my name right now,” she said.

As Ms. Duncan talks, Jeremiah alternately glides across the porch on a Razor scooter or kicks a soccer ball to himself in the front yard. With shining eyes and a shy smile, Jeremiah is full of energy, eager to show off his Spider-Man bed cover in his bedroom. When he declares, “I can climb a tree,” his mother gently suggests he do something else. She is worried about his colostomy bag, which is connected to his digestive tract through a hole in his abdomen.

“He is so amazing through this whole thing. He’ll say to me, ‘Mom, it’ll be OK.’ He’s my hero,” she says, as Jeremiah rolls his eyes.

Ms. Duncan must be available to pick up her son from Brown Academy every day at 3 p.m. because his condition prevents him from participating in the Academy’s after-school childcare program. Changing his colostomy bag is considered a medical procedure that would require a nurse, and school nurses leaves at 3 p.m., said Jane Barker, director for Hamilton County Child Care Programs.

Ms. Duncan’s requests to get a temporarily modified schedule from Moccasin Bend Mental Health Institute have been denied, and she can’t apply for family medical leave because she took off a great deal of work last year after surgery to treat her carpal tunnel syndrome, she said.

Moccasin Bend Nursing Executive Charlynne Parson did not return phone calls placed to her office on Friday.

Jeremiah’s father refuses to be involved in his life, Ms. Duncan said, and her only family support comes from her mother.

Ms. Duncan said she is determined to eventually set up an educational program that would spread awareness about her son’s disorder as a way to give back. She said the Lord and her son keep her strong.

“I don’t have to be bitter about what’s going on,” she said. “You just have to keep climbing up the mountain.”

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