Xavier Moses has just returned from summer camp. The twelve-year-old admits the rainy weather the past five days put a damper on some activities but he was able to squeeze in a little basketball. Summer camp is nothing new for Xavier. He usually spends a little time each summer at camp. This camp though is unique from traditional settings in that it is specifically designed for kids facing serious health challenges. In this way, parents can give their kids the same camp experience as other parents do but with the peace of mind that camp staff members are both educated and equipped to handle specific daily medical needs or emergencies that could arise.
Xavier is the oldest of four children with two sisters and a brother and mom Lauren Smith heading up the family who call Bradenton home. Many years earlier, Xavier was given a rare diagnosis, mitochondrial disease. This chronic condition is most commonly caused by mitochondria in the body being unable to burn food and oxygen to create energy needed for the body to function properly. There is no known cure for it but with some diligence and a steady regimen of medications that can supplement the body with essential vitamins it needs, it is a disease that can be managed. Smith says her son does precisely that each day with what she refers to as a “mito cocktail” to provide those critical vitamins.
Two years ago, the family was referred to organizations who grant wishes to children facing life-threatening illnesses. Smith, who leads the nonprofit chapter Mended Little Hearts of St. Petersburg which supports parents whose children are diagnosed with congenital heart defects, reached out to these other organizations and did her own research as a parent who, as she puts it, “was determined to give my child a special once in a lifetime opportunity, something in which Xavier would find such joy.” She learned about a longtime Tampa Bay area nonprofit Children’s Dream Fund and filled out their application. Once she was contacted and the dialogue began, she knew that she had found her family’s match.
“It took a very long time to fill out the application because as a parent, you never want your child to have a life-threatening illness. But Mallory, our dream coordinator, was there through the entire process from the time I filled out the application throughout the dream experience until now two years later,” she says. “The crew at the Children’s Dream Fund loves Xavier, they love our entire family. I felt that warm welcome from the start. These are the people who understood and knew what it was like to have a child with a life-threatening illness.”
Launching a Dream
The Children’s Dream Fund launched in 1981. The group’s primary mission then and now is to fulfill the dreams for children ages 3-18 diagnosed with a life-threatening illness who have been referred to them by physicians, nurses, hospitals, family members and friends. Cynthia Lake Farrell joined the group in 1985 as its first official employee. Farrell, now executive director for the nonprofit, was a stay at home with three children under the age of five when a sudden knock on the door changed her life.
“One of the board members who was my neighbor came to my door one day and told me about this organization that she’d been involved with and explained they were all volunteers and said we need to get better organized, and you’re the most organized person I know. I thought that was so funny,” she says. “They were downtown St. Petersburg business people trying to grant dreams. I started going to their board meetings and doing administrative tasks for them, and it grew into a position.”
Currently, the group has a list of more than 60 children awaiting dreams to come true. It’s not unusual for a half-dozen new referrals to arrive in a typical week – this week, five had already been received. But Farrell says the work is rewarding – for all involved. “I really love what we do and the impact that we’re having on the lives of sick children,” she says. “We make wonderful memories for the children and their families.”
Giving Kids the World
Dreams granted through The Children’s Dream Fund can vary in scope and extent of planning required, as well as immediacy. Recently, one teenage girl wanted her car to be ready to drive in time for her first day of school, a request that meant quick responsiveness to meet the timing. Others can take far more preparation and communication from requests to meet famous celebrities like Chris Pratt and Taylor Swift to travel excursions with the family to Hawaii or the nonprofit’s popular dream request, Give Kids the World, which enables families to visit some of the state’s most popular theme parks and explore other fun Florida attractions together. But Farrell insists that families guide the timing of the dreams based on treatments children may be currently undergoing and the family’s overall availability. “We work with families to determine when is the best time for their child to have their dream,” says Farrell.
When it came time for Xavier to make his own selection of whatever dream he wanted to have granted, it came as no surprise to his mom that he thought of his family, too. He chose the Give Kids the World family travel package. “I wanted something that my family could do with me, that they would enjoy, too,” says Xavier. In fall of 2016, Xavier and his family headed out on their journey, spending 2 days at Universal parks, 3 days at Disney parks and stopping by other fun places like the Crayola Factory, M&M Store and Florida Mall. But his favorite part of the trip might surprise most people: ice cream.
“Xavier has become an ice cream connoisseur,” says his mom. “He had a lot of food allergies for the longest time when he was younger and was on a special diet, so only during the past few years did he get to expand his diet. That’s when he tried ice cream for the first time. Now it is like he has a radar and can find the nearest ice cream shop.” The 12-year-old admits he ate the tasty dessert every opportunity he had on the trip – especially his favorite, cookies and cream, whenever available. “Ice cream is amazing. It’s my favorite thing to eat,” he says.
Reaching the Community
The Children’s Dream Fund serves as a host or key beneficiary for a few fundraisers held during the year. Its annual Dreammaker Luncheon draws much support with its most recent event recognizing former Rays skipper and now Cubs manager Joe Maddon as its Dreammaker of the Year. On Sunday, August 5, the Rays Wives hold its annual event Rays on the Runway during which children who have participated in the dream program with The Children’s Dream Fund appear onstage for a fashion show with some of their favorite Rays players as well as their wives. (Click here for more information about this year’s event.)
Xavier had an opportunity to take part in a past Rays on the Runway event, handpicked by his favorite player, then Rays player Corey Dickerson, whom he first had a chance to meet when he received the news of getting to have a dream granted. Xavier says he enjoyed participating in the runway show and getting to wear such nice clothes, appearing beside Dickerson. “I was nervous at first but then I figured, I’m walking with my favorite player, so I didn’t feel nervous anymore,” he says.
Farrell says the Rays with the Runway event has become so popular with local fans because it is one of the rare occasions when they get to see their favorite players in a more relaxed setting. “This is the only community event where you can get up close and personal with the players. Once you meet a player face to face, you’re a fan, because now you know them,” she says. “And any opportunity to take a photo with Kevin Kiermaier, well, that’s a treat for anybody.”
Xavier’s mom Lauren says that her son got so much more from the Rays on the Runway event than either of them expected. “It was a great male bonding experience for him. Not having his father in his life as a father figure, Xavier got an opportunity to talk personal with the players and they were just everyday people and spent time with them, playing cards with them and really getting to know them.”
Children’s Dream Fund has added a new fundraiser on the calendar to debut in October, Clays for Kids. And throughout a busy fall to come, the team will continue aiming to fulfill its mission as it wraps up its 37th year of granting dreams.
“We help every child that’s referred to us, we never put a child on a waiting list or turn them away, and we do every dream that’s referred to us,” Farrell says. “The families that are going through what they are going through need to know that they’re somebody looking out for them, we aren’t adding any stress to their lives, we just want to make this the most stress-free wonderful thing we can do for families, and I must tell you that we are really good at making dreams come true.”
Dreams to Come
Since his dream experience, Xavier has faced health challenges with confidence, strength and maturity, says his mom Lauren. She has brought him into the decision-making process about his own health and last July, he opted to undergo surgery that would enable him the opportunity to avoid use of a colostomy bag. Smith says a lot of preventative measures are in place to support her son’s health going forward. He is homeschooled to minimize exposure to germs, and the past 18 months have marked the first time in the young man’s life with no hospitalization at all. “I am so proud of his confidence in his decision. He chose to go that route and is in control of his own body,” Smith says. Xavier says if he could offer one piece of advice to other kids and their families facing medical challenges, he would tell them to let nothing hold them back. “Don’t let a medical condition not let you do something that you love,” he says.
In late August, Xavier turns 13 and he isn’t daunted by becoming teenager (“It’s the same thing as being 12”) but he knows it does mean he has his little brother and sisters looking up to him to be a good role model. He says he hopes one day to become a personal trainer to help people overcome their struggle with obesity and improve their health through exercise. His mom, who also serves on the family advisory council at Johns Hopkins All Children’s Hospital, continues to refer other families for dreams that she encounters through her work at her own nonprofit chapter. Children’s Dream Fund will always be the first place she suggests. “You want families to know that this group is there, and you never want your child to receive a wish but when you have the devastating news that your child has a life-threatening illness, just knowing that they can wish for absolutely anything they want and someone other than yourself is going to make it happen, it’s just phenomenal,” she says.
It is feedback from kids like this from Xavier and his family that keeps Farrell so invested and joyful about her work. “I’ve been with the Dream Fund for 33 years, and I don’t know of a day when I didn’t want to go to work. There’s always something new every day, always new children, always new stories,” she says. “You’re bringing joy to a lot of people and that’s a good way to invest your time, right?”
For more information about the Children’s Dream Fund, click here to visit their website or stop by their Facebook page to see photos from past events.
By Chris Kuhn
Photos courtesy of Children’s Dream Fund and Lauren Smith
Stay Informed with our Weekly Newsletter!And Win Free Tickets!
Stay Informed About Top Area Events, Entertainment and Best Dining Destinations and more. Plus automatically be enrolled into our A-List giving you a Chance to Win Free Tickets Every Week! Just fill-out the fields below.