Ellie: A 9-Year-Old Force of Nature

Nine-year-old Ellie Fontanetta is truly a force of nature. Born with a severe form of spina bifida, the little girl with the pink crutches is defined not by what she can’t do, but by what she has already achieved. A bright student who will enter 4th grade in the fall, Ellie plays sled hockey, baseball, swims and takes dance classes. As if that isn’t enough, she and her family are active in fundraising efforts in support of Ann & Robert H. Lurie Children’s Hospital of Chicago, a place dear to Ellie and her parents, Nikki and Marc.   

“When Ellie was born there were limited expectations as to what she would accomplish,” says Nikki. “Lurie Children’s taught us how to fight for her, and she has defied most odds given to her.”

Spina bifida affects the spine and spinal cord, commonly causing paralysis of the legs, brain malformations and hydrocephalus (excess cerebrospinal fluid in the brain). Each year in the U.S. about two out of every 1,000 children are born with the neurological disorder.

Ellie was diagnosed when Nikki was in her 20th week of pregnancy. Within an hour of her birth, Ellie was rushed to Lurie Children’s former facility, Children’s Memorial Hospital, where she received care from a team of neurosurgeons, orthopaedic surgeons and urologists at the hospital’s Spina Bifida Center. All three specialties at Lurie Children’s are ranked in the top 11 nationally by U.S.News & World Report. Ellie’s spinal cord was exposed, and her back needed to be closed immediately to avoid further nerve damage. She underwent two surgeries within her first few days of life.

Over the years, Ellie has undergone numerous surgeries, including procedures for such issues as hydrocephalus, bowel and bladder dysfunction, hyper-extended knees and club foot. In April she needed emergency brain surgery to correct a problem with the shunt that drains excess cerebrospinal fluid. She has regular follow-ups with her various specialists, and undergoes weekly physical and occupational therapy sessions.

“Ellie doesn’t view herself as handicapped,” says Nikki. “She has a drive and a desire to enjoy life, and not much gets her down.”

Grateful for the care their daughter has received, the Fontanettas have participated in numerous fundraising events for Lurie Children’s, including the Aon Step Up for Kids stair climb, Champions for Children’s, the Eric & Kathy Radiothon and the Chicago Dance Marathon, among others. Ellie and her Girl Scouts troop have also donated a wagonload of toys for the hospital’s Family Life Center. For the last few years, the family has hosted an annual “Hot Dogs for Hope” fundraiser for Lurie Children’s, which most recently raised $1,300. This year Ellie and her 5-year-old sister, Mia, added lemonade to the offerings, dubbing it, “Lemonade for Lurie’s.” 

“The hospital is really special to us,” says Nikki. “You never know when that one kid – a neighbor, a nephew, a schoolmate, a grandchild – is going to need it. There’s also a real spirit of love at the hospital unlike anyplace else, and that’s something that has helped foster Ellie’s spirit.”

Last January Ellie’s school scheduled an assembly, where a surprise announcement was made: Ellie had been named the first “Ace Cares for Kids All-Star” by the Ace Hardware Foundation. Her fellow students and her teachers reacted to the news by chanting, “Ellie! Ellie!”

“She immediately made a beeline for me and said, ‘Mom, can you believe this? I’m like Miss America!’” says Nikki. “Ellie loves interacting with people, and none of it has gone to her head. To her, she’s just doing her thing.”

As the “face” of Ace’s fundraising efforts nationwide for Children’s Miracle Network Hospitals (CMNH) like Lurie Children’s, Ellie appears in promotional material and videos, and appears at stores to promote Ace’s month-long July in-store fundraising program, “Ace Cares for Kids.” Icons featuring Ellie are available at participating Ace stores across the nation for a donation of $1 or more. To date, Ace has raised more than $54 million for CMNH hospitals.

“We’ve raised Ellie to believe in what we call ‘scattering hope,’” says Nikki. “There will always be trials in life, but hope always floats to the top.”

On Saturday, July 20 and Sunday, July 21 at participating Ace Hardware stores, make a $5 donation to Children’s Miracle Network Hospitals for a limited edition 5-gallon bucket, and receive 20 percent off everything that fits in the bucket.