Making dreams come true for Alabama children struggling with illness
By Lori Quiller
Most little girls wear shorts and T-shirts on the weekends, but not 6-year-old Anya Montelara of Wetumpka. Her standard weekend attire is a little pink dress imprinted with Disney’s stable of princesses on the front, a row of frilly ruffles on the bottom and a pink tiara headband adorned with crystals.
“I have a tutu, too,” she said, looking up from her drawing pad just long enough to flash a keen grin across the table.
“She does,” agreed her mother, Jaime Montelara, “and she’d wear them all every day if we’d let her. She’s our little princess.”
But little Anya isn’t like most 6-year-old little girls. She’s special, and not just because she’s a burst of energy like her 8-year-old brother, Nick. Anya was born with tibial hemimelia, a rare congenital anomaly in which a child is born without an intact tibia bone. Tibial hemimelia is estimated to occur in about 1 in 1,000,000 births. In Anya’s case, she was missing the tibias in her left and right legs.
Because Anya was also born without connective tissue at her knees and ankles, the physicians at Children’s of Alabama advised her parents that amputation of both of her legs at the knees and the use of prosthetics would be Anya’s best option for a full life. She was only 4 at the time.
“We heard about Magic Moments through Anya’s prosthetics group, Alabama Artificial Limb and Orthotics Services in Montgomery. One of their marketing execs saw a Magic Moments exhibit at a conference and told them about Anya,” Jaime said.
Magic Moments is an Alabama-based non-profit organization devoted to granting the wishes of the state’s chronically ill children and their families. But, according to the organization’s executive director, Joyce Spielberger, Magic Moments’ aims are much greater than just granting wishes.
“Magic Moments is not just about fulfilling the dream of a child struggling with illness. We do so much more. Because we are the only wish-granting organization devoted solely to children in Alabama, we are able to establish deep and lasting relationships with the children and families we serve,” Spielberger said. “We grow and strengthen these relationships through programs such as our annual Family Camp, minor league baseball nights and ice cream socials for our previous recipients throughout the year. We are not just about the single magic moment, but rather we become a lasting support network for those we serve.”
Both parents agreed that the organization’s positive impact on the Montelara family came at a perfect time. Raising a young child with special needs is not only stressful to that child, but the family as a whole. Anya’s wish was to visit Disney World in Florida.
All “wish” children who visit Disney stay the week at Give Kids The World Village, a 70-acre, non-profit resort in Kissimmee, Fla., that creates magical memories for children with life-threatening illnesses and their families. The village provides accommodations, donated attractions tickets, meals and more for a cost-free fantasy vacation. Give Kids The World has welcomed more than 122,000 families from all 50 states and more than 74 countries and exists through private and corporate donations.
“Magic Moments paid for everything and made all the arrangements. The volunteers at Give Kids The World Village are incredibly special. They know exactly how to work with the children and families. All the volunteers are on four-hour shifts, and most of them are retired from Disney. There was always some kind of activity for the families and children,” Felix said.
“And ice cream for breakfast was mandatory!” Anya and Nick laughed. It’s true. GKTW launched its Ice Cream For Breakfast awareness and fundraising campaign this summer in celebration of National Ice Cream Day. Anya and Nick certainly didn’t mind the sundaes.
GKTW hosted an abundance of activities to keep the families active during their stay, such as Village Idol, a talent show in which Anya and Nick did their first on-stage performance together – an interpretative dance to the theme from the movie Star Wars – and a visit to the wish tree – a tree that drops special “wish pillows” for children to store their wishes in. But this trip wasn’t just for the kids. GKTW also hosted a 10th anniversary vow renewal for Jaime and Felix, with Anya and Nick standing with their parents in the ceremony.
Another member of the Magic Moments team is Kaitlin Bitz, the statewide coordinator, who coordinates the wish moment from start to finish – from connecting the child with a volunteer, or Magic Maker, to checking in with the family after the wish has been granted.
“One of the best parts of my job is hearing the feedback from Magic Makers as they interact with these kids and get to know these families and share in on the special experience that is a magic moment,” Bitz said. “My favorite part is getting to know these families. I go to the hospital and spend all day visiting with families, listening to their stories, bringing them goodies and making sure they’re taken care of. These families have gotten so used to their only interaction being with doctors and nurses and people not meeting their eyes because no one knows what to say to a parent with a sick child.”
For the Montelaras, the magic made a lasting impression, and one the family would love to share with others.
“We are planning to go back in January and volunteer as a family,” Jaime said. “Anya and Nick are looking forward to giving other children the type of experiences we had while we were there. It’s the only place we’ve ever been where we aren’t different from anyone else because everyone who is there is there with special needs children. The whole family is celebrated so the kids that didn’t have special needs were getting a lot of attention and realized they were special, too. We’re so grateful to Magic Moments for giving us this special time that we want to give something back to other families.”
For more information, go to www.magicmoments.org.