Bert’s Big Adventure families certainly do
By Kirsten Ott
Bria Merrion has spent much of her first 11 years on receiving and recovering from 25 surgeries and counting. “I call her my little Humpty Dumpty,” says her mom Brenda. “They’re literally reconstructing my daughter.” Born with Vater syndrome, a rare association of birth defects, Bria has multiple abnormalities within her body, from kidney problems to a heart condition. It’s easy to imagine how traveling would be difficult for her and her family. “We have to have a lot of medical supplies, in addition to the equipment,” says Brenda. “And there’s a lot of medication. Things that have to be refrigerated. Things that have to be frozen. Every three hours, there’s something to do with Bria, and that’s around the clock.”
Bria is one of 14 special-needs children going on Bert’s Big Adventure, taking place Feb. 19-23, 2009, starting with a live, on-air red-carpet sendoff Thursday, Feb. 19, from 7 to 10 a.m. Bert’s Big Adventure is an organization that allows children with chronic and/or terminal illnesses, ages 5 to 12, who prove financial need and live in the Q100 “Bert Show” listening area (99.7 FM), the chance to experience a magical weekend at Walt Disney World. Bert’s Big Adventure takes these families away from hospitals, treatments and difficult daily challenges and provides them with the gift of time together.
At its core, Bert’s Big Adventure (BBA) offers these families time to create a legacy of memories in “The Happiest Place on Earth,” and then continues to provide the selected families with assistance and special perks throughout the years. The charitable vacation began seven years ago with “Bert Show” namesake Bert Weiss and his wife Stacey. “The idea of taking a plane-load of kids with chronic and terminal illnesses to Disney World isn’t a unique idea,” says Bert. He got the idea from his tenure at a Dallas morning show, where the host had established that trip for his listeners. He went on the trip twice. “I watched the families bond together. I think the kids just have a group of acceptance that they normally don’t get at school or when they’re with other kids. And I was so touched by it on those two trips that I really felt like if I ever get my own hosting gig in my own city, this is the first thing I’m going to do.” And that’s just what he did.
Q100 was established on 100.5 in 2001, with founding morning-show co-host Bert Weiss at the helm, flanked by Melissa Carter, Jeff Dauler and Lindsay Brien. (Later, Brien left and was replaced by Jenn Hobby, and the frequency on the radio changed to its current placement of 99.7.) Upon their arrival to Atlanta, Bert and Stacey immediately got started on laying the groundwork for Bert’s Big Adventure. It took a full year to get the tax-exempt 501(c)(3) nonprofit organization underway. “It is actually harder to start a nonprofit in Atlanta than it is to start a strip club,” says Bert. “It was a whole bunch of red tape.” Stacey took on the administrative task of pushing it through city council, and though she understands all the hurdles she had to leap because of so many sketchy organizations taking money from people, she says she was amazed watching strip clubs get all their necessary licenses before Bert’s Big Adventure. But persistence and patience prevailed, and Bert says, “The trip just gets better and better.”
In addition to the actual trip, Bert and Stacey have turned Bert’s Big Adventure into a year-round charitable organization, arranging reunions for the families, going to the hospitals when things get rough and even taking care of funeral costs when a BBA child passes away. “Financially, we’ve been very lucky, because we have the radio to get our donations, and because Bert has the show, it makes it very easy for us to raise money, so we know we’re very blessed that way,” says Stacey. “And we’re making sure to utilize all of our donations, so we’re always expanding our programs. We make sure there are three reunions every year for the families, and something else that we don’t publicize much is that, when we do lose a BBA child, we cover their cost for their funeral and burial. These families have nothing. I’ve sat at the bedsides with these moms, and they’re like, ‘I don’t even know how I’m going to bury them. I don’t have anything left from the medical bills.’ Because usually, at the end, they’ve been in the hospital for at least 30 days.” Empathetic as a mother and as someone who’s gotten to know these families, Stacey wanted to extend BBA beyond the trip. “We haven’t lost a lot of children, thank God.” But they’ve lost six too many, and they’ve been able to cover the costs for the last three children that have passed away. “It’s been very cool to be able to help,” she says, as she tells me that some parents were just going to cremate their children and be done with it because they couldn’t afford to do more. “Everybody came here to this earth with a purpose, and they should be able to leave with proper respect. It just killed me that they weren’t going to be able to do that.” Stacey plans on continuing to expand BBA with more programs, as well. “We want to make it a lifetime thing. They keep surviving, and we want to keep helping them.”
LET THE GOOD TIMES ROLL
For the inaugural trip in March 2003, Bert’s Big Adventure brought seven metro Atlanta children and their families to Walt Disney World in Orlando, Fla., with the purpose of showing them the time of their lives. For four days, these well-deserving families and a staff of ”The Bert Show,” members, additional Q100 employees and a medical team, enjoyed the sights and sounds of Walt Disney World in true VIP style, experiencing special treatment that other patrons normally don’t. “Each and every staff member that goes on the trip is assigned a family,” says Bert. “We really get to know them, and then we get to relate their stories on the air more. Thirteen families is about as big as I want it to get to retain the intimacy.” The kids get to know each other, too, and throughout the trip, the reunions and beyond, really begin to feel a sense of normalcy. “A lot of these kids are different. They are really the same, but they look different. So in a lot of cases, they have to find their own group. We provide a group where they are the focus point, and they are the cool kids. They’re the cool kids all weekend long, and I think that’s translated back here also. Because they all have that common bond of ‘I know where you’re coming from, you know where I’m coming from.’ And I don’t think superficial friendships are being formed—I think they’re deep friendships.” He’s right, according to Marina, who’s kept in touch with several families after their BBA trip last year. Bert and Stacey have formed their own relationships, too. “Just a couple of weeks ago, we were up at the Scottish-Rite Hospital because the Leonards were back in the hospital. That’s a family that adopted a whole bunch of kids that weren’t special needs, but their youngest [was diagnosed] with cancer. My wife and I became really close to them. They’ve visited the house quite a bit. Stacey keeps in touch with them a lot. And whenever they need anything, we’re always there for ’em.”
IT TAKES A VILLAGE
Since its first trip, Bert’s Big Adventure has grown considerably in an effort to assist more children, accommodating more than 60 children and their families. Listeners of the radio show, along with corporate sponsors and countless volunteers, donate their money, time, products and services to make Bert’s Big Adventure happen. In addition to Bria, the other 13 children attending this year include Akaya, a 5-year-old with Down syndrome and AML, who loves “Bee Movie” and anything pink; Devon, a 6-year-old with ataxic cerebal palsy and an affection for pizza and Captain Jack Sparrow; and Matty, 8, whose medulloblastoma (a fast-growing brain tumor) with posterior fossa syndrome doesn’t keep him from rockin’ out to the Naked Brothers Band, a Nickelodeon musical group.
These bubbly kids with a contagious zest for living their best lives are accompanied to Disney World by their families, which often include healthy siblings who also need a break from reality, as they’ve often had to grow up faster than their parents would like. “It’s a real unique situation for the healthy brothers and sisters, because, you know, for obvious reasons, a lot of the time, they’re not the priority. Mom and Dad are always rushing to the hospital, catering to the [special-needs] child and not paying attention to the healthy child [so] that it feels like, ‘Hey, how about me?’ We take them down with us, and celebrate together. This year, we’re doing something different and taking the healthy siblings on a separate mini-trip and letting them break away and just hang out with each other.”
SPECIAL CHALLENGES
There’s a lot that goes into play for a family considering a vacation—especially one with a special-needs child. When all their cash flow is being funneled into Bria’s medical needs, vacations are but a distant dream for the Merrions. “It’s a financial hardship,” says Brenda, who also has a healthy child, Brendan, 16. “I don’t know if people are aware, but anyone who has a child with special needs, even if they have the father and the mother in the household, it’s a big deal. It’s not just being up around the clock and the appointments, but you have to have a place to live. You need to eat. And the child has special things that they have to eat. A vacation just really was something far-fetched, especially now since we’ve been relocating for the past three years, just commuting for my daughter’s medical treatment. We haven’t found a place that we can call home, and that just hurts me as a parent. It does a lot to the kids when you have to move again. Even with Bria, moving is not a small task—we have equipment, we have to coordinate with nurses in the new state, and that’s a job in itself. So to prepare for Bert’s Big Adventure, I actually thought we would be a burden.” Choked up with emotion, Brenda says, “I didn’t want to take away from the other families because Bria needs so much with her own care.” She describes the orientation she attended for the BBA parents. “I was just waiting for them to say, ‘OK, we won’t be able to do this.’” Bria needs oxygen on the airplane, and Brenda was convinced that BBA wouldn’t want to deal with all of Bria’s multiple needs. However, she was more than relieved to hear Bert say to her during orientation, “The answer to every question is yes.” When she heard this, Brenda says, “I fell apart. I couldn’t even eat.”
This sentiment was echoed when I spoke with Marina Peck, mother of Marcella (pictured with Minnie Mouse and Snow White ambassadors), 12, and Isabelle, 10, who attended Bert’s Big Adventure in 2008. Marcella was born with muscular dystrophy, a disease that causes progressive muscle weakness and can cause a shortened life span. “The trip couldn’t have come at a more perfect time,” her mom tells me. “For us, just to be together for those days, without any concern or any worries, and just completely enjoying each other, it was really something we needed. The girls and I have been through a lot.” The challenges of taking Marcella on a trip include transporting her power wheelchair, other medical equipment and treatments, and keeping the battery going on the wheelchair. At the orientation, Marina voiced concern over getting her daughter’s wheelchair on the plane, and it was a calming Jenn Hobby who assured her that they’d taken many trips with power wheelchairs, and there was nothing to worry about. It was then that Marina realized this really could be a fun vacation. She says, “From the minute they picked us up in an accessible van, I thought, ‘Wow, I don’t have to worry—I don’t have to figure out how to get the wheelchair into the car or anything else.’ And I really started believing them that maybe I should stop worrying! And it was like that the entire time. We were in an accessible room. There wasn’t anything that I had to figure out as I normally would. It was a really nice thing that they did. Being able to just enjoy my daughters was the biggest gift ever. The first day in the parks, we went out with producer Tracey. She had her map and schedule, and asked us what we liked and what we were interested in seeing. She mapped out everything for us, show times and everything. We’re into the shows, not really the roller coasters. I didn’t have to think about anything. Tracey even let us know that they had time to eat before a certain show was starting. That alone—for somebody to take that off of me—I was just completely able to enjoy my children.”
Money raised through Bert’s Big Adventure provides the Disney Dollars for the families to spend on food, souvenirs and other sundries. At a magical destination where a soda can cost as much as two 12-packs at the grocery store, eating there is pricey. The BBA families don’t have to worry about anything with money—from refreshments to packed snacks. Marina was given a “mommy” bag embroidered with her name and containing an umbrella, money, extra batteries, sunscreen lotion, a digital camera and an emergency kit. “They think of everything,” she says. And when her daughters spotted something they liked in a store, whether it was a Cinderella tiara or T-shirt, Marina says Stacey or Tracey would be there in a second, purchased item in hand. “Stacey was on a roll! She just knew the kids, even when they didn’t say what they liked. She gave my 10-year-old daughter a stuffed Minnie dressed like Cinderella, and my daughter was bawling like she’d just won the lottery.” The Bert’s Big Adventure kids and their families are treated like rock stars and spoiled rotten—and they deserve every second of it.
