- Associated Press - Saturday, April 18, 2015

JACKSON, Tenn. (AP) - Josh and Janna Ferrell said they could not imagine what raising a child with health problems would be like.

They watched “Teen Mom” together at their home in Milan and wondered how difficult it must be. In May 2012, they got firsthand experience when their second daughter, Aubrey, was born with a kidney disease.

Janna said the first signs there might be an issue with Aubrey’s kidneys came before she was even born. She said the doctors did tests and found potential problems.

“They told us that it was possible that she may have something wrong with her kidneys, that she might have a kidney disease, and we’d have to wait until she was born and do an ultrasound,” Janna said.

She said Aubrey was born early at 34 weeks and weighed three pounds, 11 ounces. She was kept in the hospital for a few weeks, and the ultrasound was done.

“They told us everything was normal,” Janna said. “We went on with our lives thinking, we made it through without any trouble.”

Janna said over the next few weeks, Aubrey stopped growing and gaining weight. Josh said he could tell something was off with her development.

“It’s hard to explain; it just wasn’t quite right,” he said.

When Aubrey was three months old, the Ferrells decided to take her to Le Bonheur Children’s Hospital in Memphis. Janna said after a week at the hospital, Aubrey was diagnosed with congenital nephrotic syndrome, a rare kidney disease.

“Le Bonheur had not seen her disease in twenty-something years,” Josh said. “That’s scary when the best children’s hospital around doesn’t know what to do.”

Janna said Aubrey had begun to swell and have difficulty breathing from fluid buildup in her body. Because of her disease, she was losing protein, and it was affecting her thyroid, immune system and growth.

“Her kidney was filtering all of the good stuff as well,” Josh said.

The doctors determined that Aubrey needed to have a kidney removed. They did the surgery and put in a feeding tube and a central line for IV access. Six weeks later, the Ferrells went home.

Josh said his insurance would not pay for transplants outside seven specific hospitals in the country. After some research, they decided to take Aubrey to Boston Children’s Hospital in Massachusetts.

“If we’re going to have to go somewhere, we decided to go to the best place in the United States,” Josh said.

The family moves back and forth from Boston whenever Aubrey needs specific care.

Josh said caring for Aubrey takes up almost all of Janna’s time. She had to quit her job as a nurse to care for her. He said because of all the things that have to be done for Aubrey, they cannot hire a babysitter or send her to daycare.

Janna said Aubrey’s immune system is compromised because of her disease, and she has been hospitalized for pneumonia, dehydration and other sicknesses.

“You get normal stomach bug, and you have it for 24 hours,” she said. “Aubrey will get it, and she’ll be sick for three weeks.”

In January, Aubrey had to have her second kidney removed. She now has a dialysis catheter in her abdomen and has to go through dialysis every night. Aubrey needs a kidney transplant for her body to work normally.

“I was going to give her my kidney,” Janna said.

She said she went through the tests, but both of her kidneys have two arteries, which would create a clotting risk in a baby.

“It would be fine for an adult, but not for her,” she said.

Janna said Aubrey is too small to go through regular hemodialysis like an adult kidney patient would. Instead, for 12 hours each night, a solution flows into her abdomen and soaks up toxins typically removed by kidneys.

Janna said the dialysis makes Aubrey very tired.

“Aubrey doesn’t know how to walk,” Janna said. “She’ll be two in May, and she can’t walk. She can’t crawl. She doesn’t eat … She’s just not able to do the typical things that she should do.”

Janna said it is sad to see other kids do things that Aubrey cannot do. She said Aubrey goes to physical therapy, occupational therapy and speech therapy every week.

“She’s getting there,” Janna said.

Aubrey has another kidney donor lined up who is going through testing now. Josh and Janna said they are hopeful that the donor will be cleared, and Aubrey can get a transplant in the next few weeks.

Josh said the transplant will require them to stay in Boston for six months. He said they are renting a house there now because they have to go back and forth so much.

Regardless of recovery time, Josh and their oldest daughter, Riley, will have to return to Milan in August.

“She’s starting kindergarten,” Janna said. “. I know it’s tough on her, too.”

Janna said they cannot always afford to take Riley with them to Boston, especially if they fly. Josh, a lineman at Gibson Electric, said Aubrey’s issues have created a financial strain.

“It’s tough to go from two incomes and one house to one income and two houses,” he said.

He said his co-workers have been very helpful, giving him days off and raising money. Janna said the community has held several fundraisers for Aubrey as well.

“You hear about being in a small town, everybody’s always in your business,” Josh said. “But without that, we wouldn’t have been able to make it.”

On Facebook, Aubrey has a fan page called A Kidney for Aubrey. She has almost 1,300 likes.

“We were at the grocery store last week, and a lady came up and said ‘Are you Aubrey?’” Janna said. “We had never met her.”

Janna said she appreciates the prayers of friends, family and strangers. She said the support has been overwhelming, and Aubrey has many people invested in her future.

“We just want her to have a normal life,” Janna said. “I hope she grows and learns and lives to be an old lady.”

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Information from: The Jackson Sun, https://www.jacksonsun.com

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