Vicki Lee’s sister died suddenly in April 2016, leaving behind a 9-year-old special needs daughter whose health problems included everything from partial blindness and deafness to other genetic disorders.
Vicki and her husband, Eric, of Culleoka, decided they would care for tiny Jamie Munson and drove 20 hours to Grygla, Minnesota, population 200 just south of the Canadian border, to pick her up.
When family services in Minnesota reached out to Vicki, social workers asked, “Are you going to take her?”
Vicki, 57, said she was not sure and talked with her husband, Eric, 63. They live in a three-bedroom, two-bath home in Culleoka, with Eric working as a boat repairman.
“I had really close friends who tried to talk me out of it,” Vicki said. “I did not have the heart to just leave her. It was either us, or she would go into the welfare system.”
More than two years later, Vicki and Eric have found out their friends were right. Caring for a child who needs constant attention is rigorous physically and mentally. It’s especially hard without the right equipment, such as a custom van or medical devices to care for her.
“The biggest problem was lifting her in and out of the bathtub,” Vicki said. “The next one was getting her to and from her doctors appointments.”
Vicki and Eric, who both have bad backs from lifting their niece, were driving a 2000 Chevrolet Cavalier. They barely had room to fit a folding wheelchair into the trunk, let alone figuring out how to squeeze Jamie into the backseat. They could not take Jamie’s $7,000, insurance-provided electric wheelchair anywhere.
Jamie was 36 pounds when she came to Culleoka. Now 11, she weighs about 65 pounds.
“I started immediately looking for someone — anyone — who could help us with transportation,” Vicki said. “I starting raising funds. But we were getting nowhere. A special-needs van costs about $45,000.”
Then the heavens opened for the Lees.
A friend in Florida told them about Chive Charities, a national organization “committed to championing the underdogs.” Chive Charities targets rare medical diagnoses, first responders, veterans and special education initiatives for assistance.
“Chive Charities spreads awareness through sharing the personal stories of grit, courage, and never giving up,” its website says.
Vicki applied for a grant, and more than six months later, she was approved. On Halloween, the family went to La Vergne in Rutherford County to pick up a 2018 Dodge Grand Caravan donated to them by Chive Charities.
“We feel blessed because there are so many families out there who need help,” Vicki said. “I have tried and tried and tried since we got her to get help with lots and lots of things. There is no one out there.”
Chive Charities asked Vicki to submit an application and letters from Jamie’s doctors. The group did not send anyone to Culleoka for a background check. It did not try and gauge their sincerity.
“I got the phone call, saying I was approved, and it was a huge relief,” Vicki said. “I did not know Chive Charities. They did not know me. But they assigned me someone to work with, and they came through and delivered on everything.”
The Lees went to Mobility Works in La Vergne and were fitted for the van. Jamie requested a burgundy one.
“They told us they were usually black or white,” Eric said.
“But when we got there, it was burgundy,” Vicki said, smiling.
Jamie goes to physical therapy, eye and doctors appointments up to 10 times a month. She has dysplasia in her back, spine and hips and suffers from Stickler syndrome, a hereditary condition that comes with a distinctive facial appearance and eye abnormalities, hearing loss and joint problems.
“She has no cartilage in her nose. If you touch her nose, it is like a marshmallow,” Vicki said. “She ended up having a palate issue that she had surgery on. She has brittle bone disease. She now has a chronic constipation issue that we deal with on a regular basis.”
The Lees were having to rely on public health transportation for appointments. It showed up sometimes. Other times, it didn’t.
“Now we can take her and her electric wheelchair everywhere,” Vicki said. “She can go to the grocery store and all of her doctors appointments. The electric wheelchair is comfortable, built for her size. Her folding chair was made for someone smaller like when she first arrived.”
The Lees enrolled Jamie in Maury County Schools in August 2016 but decided to home-school her the next year. Culleoka Unit School had 10 different part-time aides who alternatively were assigned to work with Jamie, Vicki said, but it did not work out. Jamie failed to make a connection with them and was making no progress at school. She is supposed to be in the fifth grade. She is learning at a first-grade level.
“I had told the school district that she was grieving over the loss of her mother and that she was naturally shy and awkward,” Vicki said. “I told her it would be best for her to have one classroom assistant or two at the most. She needs to bond with that person and trust that person. They assured me there would be no problem. She went to the school and had 10 different ones throughout the school year.”
Vicki also said there were issues at the school with Jamie’s safety. She was allowed to drive in the hall without her glasses one time, Vicki said. Jamie wears thick glasses and can barely see with them, let alone without them.
“She got upset one day with her electric wheelchair and broke her glasses,” Vicki said. “The classroom attendant allowed her to drive without them. She ran into a wall, damaging the chair. Luckily, she did not hurt herself.”
Home-schooling has been difficult. Jaime gets distracted easily. Vicki keeps repeating the same subject matter over and over.
“There’s a lot of days when I am exhausted,” Vicki said. “It’s hard to make time for all of the schooling, but she has got to have it.”
Inside her Culleoka home, Vicki and Eric decorated Jamie’s room with half Minnie Mouse and Betty Boop decor, celebrating the cartoon characters.
“She knew Minnie Mouse right away, but when she saw Betty Boop, she asked me, ‘Who’s that woman?’ ” Vicki said, chuckling.
Maury Regional Health’s foundation was assisting the Lees in the search for the van. It pledged $500 to buying one, once the Lees found it. When Chives Charities provided the Grand Caravan free of charge, the Maury Regional Foundation made a $500 donation to the charity.
“I thought that decision was very nice,” Eric said.
On the back window of their new van, a banner reads, “Jamie’s Jurnee.” Jamie did not like the traditional spelling of “journey,” so the family improvised — something they learned to do well in caring for the girl.
“Jamie’s Jurnee says it all,” Vicki said. “It describes in two words everything we’ve done since my sister died, Jamie arrived and the van was donated.”
The future remains uncertain for Jamie, with her long list of medical challenges. But the Lees say they’re determined to keep fighting on her behalf.
“I believe in perseverance,” Vicki said. “I might feel exhausted and tired, but I never give up. We never give up.”
