October 30, 2018
It’s rare to see Avery Hill without a smile on her face. At just 4 years old, she’s outgoing, talks a mile a minute and loves high-fives almost as much as hugs.
She also fights for every step she takes and constantly works to beat the odds of cerebral palsy.
Avery was born nearly four months early, at just 29 weeks, on October 25, 2014. After 64 days in the Sanford Children’s Boekelheide Neonatal Intensive Care Unit, her parents, Mindy and Jared, brought their baby girl home for the first time.
That was four years ago, the day after Christmas. At the time, Jared and Mindy didn’t know what their daughter’s future would hold.
“I just didn’t know what to expect,” Mindy recalled. “Someone described it as seeing your heart walking around outside your body. That’s exactly what it was like. It was my heart sitting next to me in an incubator, fighting for her life. It was all just so hard to handle.”
Every step is a victory
After five days in the NICU, Avery’s doctors discovered she was suffering from two brain bleeds. The possible repercussions of her premature birth and this new development were endless, but only time would tell how Avery’s future would be affected.
“That was the hardest part,” Mindy said. “Not knowing what was going to happen.”
Mindy – a flight nurse at Sanford Health who has seen so many traumatic injuries – envisioned her daughter in a wheelchair, not being able to function for herself.
A year later, Avery was officially diagnosed with spastic cerebral palsy. Mindy and Jared learned Avery might struggle to walk, talk and even be intellectually impaired but also that each child diagnosed with cerebral palsy is different.
- 1 in 2 has an intellectual impairment
- 1 in 3 is unable to walk
- 1 in 4 is unable to talk
After the diagnosis, Mindy and Jared started celebrating even the smallest milestones, taking pictures of Avery reaching for her first toy and cheering when she stood for the first time.
It wasn’t long before Avery showed her parents that nothing would hold her back, least of all her diagnosis. Whether she’s playing at recess with her junior kindergarten friends or at one of her many physical therapy sessions, Avery is always working to overcome the odds.
This year, Avery wore out her first pair of shoes from all the time spent trucking along in her walker. She’s become so good at walking, she no longer needs to bring her wheelchair to school every day and can ride the bus with her friends.
She‘s also now a big sister and can’t get enough of baby Reagan.
Remembering Avery’s triumphs and how far she’s come brings tears to Mindy’s eyes.
“Those moments kind of just hit you; you realize, she’s doing it. She is making it on her own.
“All of her improvements are definitely because of her. She has the can-do attitude and puts in the hard work. We just sit along the sidelines and cheer her on.”
Every step is a hard-won victory for Avery. Right now, she’s in physical and occupational therapy almost every day, swimming at Adaptive Aquatics and riding her favorite horse, Peggy Sue, at hippotherapy.
As Avery grows, she could require surgery to help her walk better and will likely continue to need therapy for the rest of her life. She might always need a walker or cane to walk, but Mindy and Jared look forward to a future where their daughter can do just about anything she wants.
Make a difference this holiday season
From Avery’s first breaths in the NICU to her ongoing treatment, Sanford Children’s Miracle Network and its many generous donors have been there, helping Avery reach each milestone. Here are just a few of the ways donors have made a difference for Avery:
- Helping purchase lifesaving equipment that gave Avery a chance to grow and thrive after she was born too early.
- Providing direct family assistance and meal vouchers for Mindy and Jared during Avery’s 64 days in the NICU.
- Supporting the Child Life Specialists who were there to bring a smile to Avery’s face after each procedure at the Castle.
“I just can’t imagine not having these services close to home,” Mindy said. “The care that these kids get here is just so pivotal to how well they do. It’s pretty incredible.”