Sitting in her Dora the Explorer-themed room, Macie Greene is in her element.
The 9-year-old has Rett syndrome, which is in the autism spectrum of developmental disorders. But it doesn't prevent her from smiling.
“Dora is her comfort zone,” Macie's mother said. “It just clicked with her.”
The daughter of Mike and Brenda Greene was born with the neurological disease that affects girls almost exclusively. Macie can't talk and can't feed herself. She has scoliosis, kidney stones, digestive problems and at times severe anxiety.
The family had no idea Macie had the disease until she was about a year old and wasn't doing many of the things other kids her age were doing. A blood test ultimately confirmed the disorder.
As Macie has grown, the day-to-day reality has become more challenging. She weighs 60 pounds and must be lifted in and out of her chair.
“She completely relies on us to get her from Point A to B,” Mike Greene said. “Getting her out of her wheelchair and into a car seat to go to her appointments or for us to go out as a family is getting more and more difficult as she grows.”
Brenda Greene reached a low point a few months ago as she attempted to load Macie and her wheelchair into their car during a rainstorm.
“I'm by myself when I take her to appointments a lot of the time, so there are no extra arms to hold an umbrella,” she said. “She gets wet, and then her cloth seat gets wet. I looked back and saw her glasses were covered with raindrops and she couldn't see. It was just very frustrating.”
That's when the family started looking around for a van to accommodate Macie's wheelchair. The specialized vans cost more than $50,000, an amount that would be difficult to afford on Mike's salary as a police officer and the other jobs he works to help make ends meet.
“It's important to me and to our family that Brenda stays home with Macie because she requires so much daily care,” Mike Greene said. “I do what I have to do to make sure we have what we need. But at the same time, buying a van like that would be difficult.”
The few used vans they could find had more than 100,000 miles on them.
Brenda Greene found a contest by the National Mobility Equipment Dealers Association that will give away three specially equipped vans. Since March 11, Macie has received more than 22,000 votes on her page at mobilityawarenessmonth.com.
The top 5 percent of vote getters will be reviewed by a panel that will select the winners in May.
Telling Macie's story
But to enter the contest, Brenda Greene knew they would have to tell Macie's story, something she wasn't comfortable with.
“We're pretty private people in general, and we've always been private about Macie,” she said. “But after talking with friends one day, I was just filled with peace about it.”
The Greenes, who also have two college-age daughters, think winning the van could make life a little easier. Brenda tore the rotator cuff in her shoulder last year and has been putting off surgery.
“I wouldn't be able to lift anything heavy for six months, and that's something we just can't do right now,” she said.
Despite the difficulties, the Greenes have learned to survive and prosper.
“We just go with the flow,” Mike Greene said. “That's about all you can do. We have fun as a family. Macie's a happy kid. And that's what matters most to us.”
Macie goes to school and is in specialized classes. Most days she rides the bus.
“She has some anxiety but she loves to go to school,” Brenda Greene said. “The water is one of her favorite things. She loves to swim. She enjoys kids her age. She likes it when they come up and talk to her. A few years ago she didn't like that at all.”
The family has been humbled by the response to their quest for the van.
“Friends started sharing it with friends, and it just exploded from there,” Brenda Greene said. “We're so grateful for the support. People have been very generous. You want to thank every one of them individually.”
How to help
To vote for Macie Greene in the van giveaway, go to mobility