Amani Rhodes’s world consists of her small pink bedroom, Dora the Explorer, hospital emergency rooms and her grandmother’s car. Last year, the 5-year-old, who suffers from a rare genetic disorder, started school, but she had to stop after she had a heart attack.
She is no longer able to walk, and between her portable ventilator and wheelchair, even short trips down the porch steps to the driveway for physical therapy or doctor’s appointments require the help of a small army of family members.
Just after sunrise Saturday, three dozen volunteers descended on Amani’s yellow Capitol Heights bungalow to try to make that journey a little brighter. They were from Christmas in April, a volunteer organization that each year helps a select group of low-income residents with much-needed home repairs.
A gaggle of college students took over the first floor, painting the walls. A pair of firefighters tackled the loose railing inside. More firefighters and members of a chapter of AARP swarmed outside with string trimmers, rakes and trash bags. They scooped up dirt, yanked weeds, lay mulch and spray-painted a chain link fence.
Junior Lowman, Amani’s grandfather and the house’s owner for 23 years, looked slightly stunned as he took in the scene. “It’s crazy,” he said. “Good crazy.”
The Lowman home was one of 83 chosen this year by Christmas in April. Since its founding 25 years ago, the group has repaired 2,253 homes in Prince George’s County.
This year’s signature annual event was marred on Friday, when a fire severely damaged the home of Susie Williams, 75, just one day before Christmas in April was to pay her a visit. The cause was possibly electrical, and an investigation is ongoing, said Mark Brady, spokesman for Prince George’s County Fire/EMS Department. The Red Cross is providing temporary housing for Williams.
John Weaver, a Capitol Heights volunteer firefighter, helped put out the blaze at the Williams home before serving as house captain of the Lowman project. Weaver has worked with Christmas in April for 25 years. He helps choose the winners by conducting inspections and interviews. After meeting the Lowmans, he wanted to help right away. “This one captured my heart,” he said.
Inside Amani’s room, it felt like just another Saturday. She lay in her bed, surrounded by a stuffed SpongeBob SquarePants, her new favorite Mickey Mouse balloon, a ventilator, a feeding pump and an oxygen monitor. On the floor rested a disassembled wheelchair with “Amani” embroidered on the back of the seat over a rose.
A firefighter popped his head in to ask Amani’s mother how many outlets were in the room. The volunteers discovered that the air conditioner, all of Amani’s equipment, the ceiling fan they were about to install and the lights were all on one circuit. As if to prove his point, the power flickered on and off, sending red lights flashing on the ventilator. A few volunteers stayed late to fix the wiring.
Amani was shielded from most of the hubbub by a SpongeBob comforter hung as a curtain across her doorway. Occasionally, the sound of strange men’s voices broke through the hum of the air conditioner, prompting Amani to ask her mother, “What is that?”
“It is nice to hear her voice again,” said her mother, Alicia Tyson.
Amani recently regained the ability to talk after having problems with her tracheal tube.
Amani’s condition, known as congenital fiber type disproportion, came as a bit of a shock, Alicia Tyson said, because no one in their family had ever had anything like it. She learned that she and Amani’s father carried rare genetic mutations that can lead to the disorder.
“She’s the best surprise I ever got,” Tyson said. “Anything I have to do to make sure she is okay, I don’t care what I have to do. I’ll do it.”
Amani has to be hooked up to a monitor tracking the amount of oxygen in her blood. She sleeps using a ventilator. A nurse comes to stay with her from 11 p.m. to 7 a.m.
Her father, Andrew Rhodes, 29, said he hopes she will be able to walk again. Despite her recent medical setbacks, she still asks lots of questions and enjoys working on puzzles on her wheelchair tray. “She’s the smartest 5-year-old I know,” he said.
The hour for a group photo approached. The volunteers were still working, debating whether to take out a tree stump in the back yard with termites in it. Upstairs, Amani lay in her bed, her hair in neat braids, dressed in a gray T-shirt, gray sweat pants and spotless black sneakers.
Rhodes unhooked Amani from her monitor and gingerly lifted her up and carried her downstairs. As the volunteers gathered below to watch, he put her in her wheelchair and pushed it onto the newly installed lift. He pressed a red button. He and Amani slowly began to descend as the volunteers started clapping.
Afterward, Junior Lowman got up to say thank you. “We really appreciate it,” he said. “We really needed it.”