When we think of children with illnesses who receive wishes, we are often moved by the grand gestures of special events, celebrity visits, and trips to Disney World.
But for some children and their families struggling financially, their only wish is for a comfort that will help soothe their child or enable them to move through the world more freely: something like a customized wheelchair for a child with Cerebral Palsy, or silk bed sheets for a child with a painful skin condition.
Debbie Savigliano has made those wishes and 13,000 more possible for children across the U.S. through her nonprofit, Bianca’s Kids. The nonprofit is named after her late niece, who worked with and had a passion for children who struggled for any reason until a tragic accident took her life.
“One of her dreams was to continue her education to work with children, and I felt her dream didn’t have to die just because she did,”Savigliano said. “With every wish we granted, that hole that existed in my heart began to fill with something more than despair. I learned early on that there is so much healing in helping others.”
One of those children was eight-year-old Jared, who suffered a stroke before birth, which led to a blockage that caused a buildup of cerebrospinal fluid and required seven surgeries.
Jared’s mother made a wish for an iPad to help him with communication and brain stimulation.
“As time went on, I learned the extent of his brain damage…he doesn’t stand, walk, or talk, and is blind in one eye,” his mother said. “We have dedicated countless hours to help improve Jared’s quality of life. It’s not easy, but Jared deserves to have the best life possible.”
Wish granted: now, the iPad provides Jared hours of fun and brain challenges
Savigliano was especially touched when she received a wish request from a man named Jerry son behalf of his granddaughter, DeeDee, whom he’s had custody of from birth. He explained that while DeeDee has Cerebral Palsy and is also nonverbal, she is an otherwise feisty teen who loves life. However, she’s also growing older and heavier, so it’s becoming harder for Jerry to to carry her to and from doctors’ offices, the car, and school.
Jerry could only afford a basic wheelchair for DeeDee, as their health insurance wouldn’t cover the chair she really needed, a Convaid Stroller, which is easily goes up and down stairs, and can cost about $6,500. More than anything, said Savagliano, Jerry expressed that he was heartbroken because the chair limited DeeDee so much, reducing most of her outings to school and doctors’ appointments. He wanted her to be able to experience life like every other teen.
“When we get the wishes for needs as opposed to wants, it’s thrilling and heartbreaking at the same time,” Savigliano said. “To be able to solve a problem from a struggling child and their family is a soul feeding like no other. Those wishes change the quality of life for the entire family and are our favorite to grant.”
The nonprofit granted Jerry’s wish, and, since then, DeeDe has experienced many firsts: her first Christmas parade, her first shopping trip to the mall and on and on.
“Bianca’s Kids granting of a wish to DeeDee has meant so much to, not only her, but me as well,”Jerry said. “DeeDee doesn’t ask for much, but she likes to get out and see what the other kids are doing. She likes being among people, the more the merrier.”
He continued, “With her new wheels, she’s able to go to the mall, boxing shows, church and explore so many other adventures and avenues that she couldn’t experience before. When we bring out her Convaid Stroller, she gives a smile that could light up the midnight sky.”
18-year-old wish recipient Devon also has Cerebral Palsy, and is living proof that lacking the use of one’s legs—and struggling with homelessness—doesn’t have to deter you from staying on the honor roll and playing on the varsity football team.
When Savigliano heard that Devon, on top of all of his other achievements, managed to receive an athletic scholarship to St. Cloud University, she gifted him with $1,500 to help with college costs, a dorm kit filled with everything he needed, and his very own a racing wheelchair, because he wanted to join the high school track team.
She also gave him the means to start his own nonprofit by connecting him to a nonprofit attorney in Georgia, who is helping Devon establish his own organization—totally pro bono, of course.
No wish, however, is as bittersweet as the one granted for five-year-old Georgia, who was born with a rare and painful skin disorder called Non Bullous Congenital Ichthyosiform Erythroderma, a painful condition that has no cure.
Her mother, Misty, wrote to the nonprofit about how she feels about the the glares they get when the two travel outside together, which are almost as painful as the physical pain Georgia endures.
“Misty explained that on top of all the medical struggles they deal with, they were also struggling financially and needed a new bed for Georgia, which they couldn’t afford,” Savigliano relayed. “Sheets were also an issue, as when Georgia’s skin rubs against cotton sheets, it hurts.”
Since Georgia loved Dora the Explorer, the nonprofit surprised her with a Dora bed and a Dora satin comforter and sheets set. They also sent her princess pajamas and new clothes that would feel soothing on her skin.
“I’d be lying if I didn’t say how gut wrenching it is to hear so many kids with needs that we can’t help for financial reasons,” Savigliano said. “We work so hard because our goal is to be able to grant 100% of the ‘need’ wishes someday. That’s what drives us all.”
Savigliano’s memoir, From Grief to Gratitude, also drove Michelle Lamelza, an executive producer with Fastlane Productions, to want to make a film based on the book, which was released in February of last year and chronicles the nonprofit founder’s struggle to cope with the loss of her niece and build the nonprofit in her honor.
Tomorrow, a screening of the documentary will take place in Savigliano’s native New Jersey, and the film is currently being submitted for festival consideration, and the team is exploring their broadcast options as well. Stay in the know by following Bianca’s Kids and From Grief to Gratitude on Facebook.
To submit a wish for children ages 0-18, visit, www.BiancasKids.org and click the “submit a wish” tab.
Featured Photo CC Honza SoukupShare this article: