Ellie Fontanetta has worn Chuck Taylors almost since birth. She's owned bright pink pairs, sparkly pairs, red pairs, high tops and low tops. They match her personality: bright, spunky, easy-going.
But her dream is to wear high heels.
Ellie, 11, has spina bifida, and the pink braces on her legs make it hard to find shoes that fit. That doesn't stop her from dreaming of stilettos, though. In fact, Ellie's spina bifida doesn't stop her from dreaming at all.
“I want to be a teacher ... and a doctor ... and a ... uhhh what else,” she ponders, while tapping her chin.
Parents Nikki and Marc Fontanetta love that their daughter fearlessly goes after what she wants, and they have every intention of making her dreams a reality. “Those hopes and dreams that we had when she was teeny-tiny, not one has not been able to happen,” Nikki says.
When Nikki and Marc initially found out that Ellie would have spina bifida at their 20-week ultrasound, they didn't even question that they wanted to raise her to be as strong as possible, despite multiple doctors and even family members recommending that they terminate the pregnancy. They sought out a doctor who would help them give Ellie a full life with spina bifida.
“We finally found David McLone at the spina bifida clinic at Lurie, who told us that we actually could do it. We said, `OK, what do we do now?' And he said, `Just enjoy your pregnancy,'” Marc says.
“And that's exactly what we did,” Nikki smiles. “We grabbed life on life's terms, and we ran with it.”
Now, Ellie, a petite brunette with a radiant smile and a ranch dressing addiction, has played sled hockey, attended summer camp, sang in the school chorus, danced since she was 2 and been involved in more charities than she can count. Basically, Ellie's done whatever she has put her mind to. Her parents have a policy that they will never say no to anything she wants to achieve.
“We just find a way,” Marc says.
“Resilience, no matter what kind of day you've had, is being able to sit down at the close of the day and say `I still have something to be grateful for,'” Nikki says.
That's one of the biggest reasons Ellie's doctor, Dr. Robin Bowman, head of the spina bifida clinic at Ann and Robert H. Lurie Children's Hospital, says they've thrived. “Ellie's family just has this incredibly positive outlook on life that they've instilled in Ellie since birth,” Bowman says.
Ellie's daily routine is grueling, with a 5 a.m. wake-up to complete all of her medical needs in time to catch the school bus. She has dietary needs, physical therapy, special accommodations, medicines, injections ... the list goes on and on. “There are a lot of have-to's in our life,” Nikki says. “There aren't a lot of choose-to's. That can get really hard.”
The daily rituals of having a child with special needs limit the people who are involved in the Fontanettas' lives. “Sometimes the hardest part is that people don't get it,” Marc says.
People don't often understand why they can't just go to a water park on a moment's notice or drive up to the northern suburbs for dinner on a Friday night.
But the people that do understand are the reason that the Fontanettas think they've been able to handle as much as they do.
“We are abundantly blessed by our tribe,” Nikki says. “I think that's a huge chunk of resilience, synergy. I think that as people, we are not meant to do life alone. We are better people and better parents when we have community.”
Ellie's friends are who she says fill her “soul bucket” up the most, especially friends like Faye who also has spina bifida and is Ellie's most loyal visitor in the hospital. “We know how to be brave together,” Ellie says.
Ellie's 8-year-old sister, Mia, is always right by her sister's side. “I think our family is special because we can make it through life with surgery and being sad,” Mia says. “We've had a lot of practice.”
And Ellie's family makes sure she never feels alone.
“There is always going to be a to-do list, but there is not always going to be a tomorrow. We just feel like life's a gift, and it's worth living,” Nikki says. “And we've taught our kids to do the same.”
See more of Emily's stories here.
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