Hope & Happiness

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In April 2013, seven-year-old Weston Keeton had the experience of a lifetime: a trip to Disney World with his mom, dad, and six siblings. From the outside, this family of eight looked like any other family taking in the magic of the park—laughing, playing, and enjoying the characters, rides, parades, and ice cream treats. But Weston was battling a range of health issues due to a congenital heart condition he was diagnosed with at just nine days old.

Weston and his family were able to celebrate his special wish together, creating lasting memories for his siblings and parents.

Weston and his family were able to celebrate his special wish together, creating lasting memories for his siblings and parents.

When Make-A-Wish East Tennessee received a referral from a social worker at the Children’s Hospital of Philadelphia, where Weston was awaiting a double lung and heart transplant, the staff got to work coordinating with his medical team to find the right time to grant his wish—a seven-day adventure that his family will forever cherish.

“The trip was the first time in a long time that our family had gotten to be together,” says Julie Keeton, Weston’s mom, who lived apart from her husband and other family in Kingsport, TN, for three years while Weston received treatment in Pennsylvania. “The trip gave us peace of mind knowing that if something happened to Weston we had made those memories with him with his brothers and sisters.”

Since his birth, Weston had faced a range of setbacks and multiple open-heart surgeries, but each time he defied the odds—a true miracle case for his doctors, who worked hard to give him the chance to take the trip.

“I don’t think Weston would have had the strength to fight for so long afterwards if he had not had known that we got to have that special time together,” says Keeton. “I really feel like the timing was perfect, and it gave Weston the strength to survive for another year.”

The Power of a Wish

Since opening in Chattanooga in 1988, Make-A-Wish East Tennessee has granted more than 1,000 wishes in its 36-county service area to children facing life-threatening medical conditions. It is one of 61 chapters nationwide providing hope, strength, and joy to children and their families.

“The power of the wish lies in the fact that it is something that is meaningful to that child,” says Lara Caughman, Director of Program Services for Make-A-Wish East Tennessee. “I have literally seen wishes save kids’ lives. The mind is so powerful and emotions are so powerful. We have had kids who have been at the point of giving up, and we get calls from social workers asking for our help. It is amazing to see the physical turnaround that can happen from a wish.”

The Make-A-Wish Foundation conducted a national study that has quantified what Caughman and other staff at Make-A-Wish East Tennessee already knew about the power of a wish. Nearly 90 percent of health care professionals believe the wish experience can influence wish kids’ physical health and 74 percent of wish parents observed the wish marked a turning point in their child’s response to treatment.

For Weston, the wish process not only gave him the strength to keep fighting for his transplant—a miracle that happened in December 2013—it allowed him to be a normal kid for a week, something his parents worked hard to make happen as much as possible.

“Weston had the best time of his life on our trip surrounded by his brothers and sisters,” says Keeton. “He got to blend in and be a regular kid. And I think that is all he has ever wanted, to just be regular.”

The family’s journey began at Give Kids the World, a special 70-acre resort in Orlando, Florida that exclusively serves children and families who are on a wish trip. While Weston loved everything he got to do at Disney—special meet and greets with Peter Pan, Merida from Brave, and Darth Vader—getting to swim was one of his favorite experiences of the trip, something he had never done before due to his condition.

Granting a Wish

The journey to grant a wish begins with a referral from a health professional, social worker, parent, family friend, or the child. Make-A-Wish program staff then get to the nitty-gritty work of confirming a child’s eligibility and assigning a team of staff and volunteer “wish granters” to work with the child and family through the whole process. To qualify there are just two requirements: a child must be two and a half to 18 years old and be facing a life threatening medical condition (such as cancer, cystic fibrosis, certain heart conditions, or other conditions confirmed by the medical provider).

“Our goal is to grant every eligible child’s wish,” says Bob Lewis, president and CEO of Make-A-Wish East Tennessee. “There are misconceptions sometimes that the wish is gratitude, just a gift because of what the kids have gone through. But it is far more than that—it is bringing them that hope for the future and the strength to keep fighting.”

Each year, Make-A-Wish East Tennessee grants over 70 wishes across its service area, relying heavily on volunteers and fundraising to carry out its mission. Each wish costs, on average, approximately $8,000 and takes about seven months to plan and carry out, although staff have planned “rush wishes” in as little as 24 hours when a child’s condition has declined.

“We have about 120 volunteers who act as volunteer wish granters throughout our territory,” says Caughman. “It is a great role that they play. They go and meet with the family, talk about the different wish categories, and help the kid think through ideas to choose their wish.”

While the wish is being planned, Make-A-Wish sends small gifts to the child and continues to stay in contact with the family to coordinate the wish.

“Regardless of what the wish is, one of the things we hear most frequently from the parents is their gratitude for being able to see their child smile and laugh,” says Caughman. “Weston’s wish has happened but the impact continues. It is so important for families to draw on those recollections of the wish and those happy times of laughing together.”


 

Left to right, Kristen Eustice, Wish Coordinator; Stephanie Wilkens, Director of Development; Abby Carden, Project Coordinator; Brianna McDaniel, Program Assistant; Bob Lewis, President & CEO; Lara Caughman, Director of Program Services

Left to right, Kristen Eustice, Wish Coordinator; Stephanie Wilkens, Director of Development; Abby Carden, Project Coordinator; Brianna McDaniel, Program Assistant; Bob Lewis, President & CEO; Lara Caughman, Director of Program Services

In March 2014, Weston lost his fight due to complications after his heart and lung transplant. “We had seven great years with him here,” says Keeton. “He taught us more about ourselves than we ever thought possible. His spirit left a huge impression here on earth. We are so thankful to Make A Wish East Tennessee and Give Kids The World for making Weston’s wish come true.”

To learn more about Make-A-Wish East Tennessee or to make a referral, visit http://etn.wish.org

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Jennifer Watts Hoff is a frequent contributor to Chattanooga Magazine.

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