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Strength of Spirit: Jordynn's Story

Cerebral palsy patient Jordynn

In 2014, Jordynn entered the world fighting. Born at 30 weeks, the little girl spent six weeks in Cook Children's Neonatal Intensive Care Unit before going home with her parents.

Jordynn seemed like a happy and healthy baby girl, but her mother, DeAdriene, began to think something wasn't right.

"As the other babies around us started to move and be mobile, we noticed that Jordynn wasn't moving," said DeAdriene. "We were told not to worry until she hit 18 months. We decided to wait, and everyone was asking us, ‘When is she going to walk? She needs to hurry up and walk.'"

Eighteen months came and went and Jordynn still wasn't moving like her peers, so her parents made an appointment with both Cook Children's Neurology and Orthopedics departments.

"That's when we found out that she had cerebral palsy," said DeAdriene. "In my culture, it's like the worst thing that could ever happen. In reality, this is the best thing that could have happened to our family."

Jordynn was diagnosed with a form of cerebral palsy called spastic quadriplegia. It was a heartbreaking, especially considering the family was already struggling because Jordynn's father had lost his job.

"When she was diagnosed, Jordynn also had a tethered cord—her spinal cord was attached to her spinal column instead of free floating," said DeAdriene. "The doctors told us she needed surgery to detach it, and we did it because she wasn't sitting up, she wasn't walking."

Jordynn, 6, had the surgery and began physical therapy through Cook Children's Rehabilitation Services to help her meet some of her developmental milestones.

She is very stubborn. When she has her mind set on something, there is nothing you can do to change it."

Jordynn can be strong-willed Jordynn with Journey and difficult when she wants to be. That's why Cook Children's physical therapist Jean O'Mara had her work cut out for her when she met Jordynn.

"Jean has been Jordynn's therapist from the time she was 18 months old," said DeAdriene. "In the beginning, Jordynn would literally sit in therapy and do nothing. Jean would try to get her to do exercises, but she would do nothing. Jean was so patient, kind and nurturing. She coached Jordynn through it, and that went on for about six months. And Jean did not give up on Jordynn."

In keeping with Cook Children's belief in family-centered care, Jean helped DeAdriene find support groups for families with children who have different abilities. And that level of attention and care didn't stop with Jean.

"At Cook Children's, we have been given the tools and resources that we needed to make the best decisions for our child. There was no pressure," said DeAdriene. "Even when there were times that we couldn't pay, they still worked with us. When we get in our next tax bracket, we will definitely be donating to Cook Children's because it has been an amazing experience."

Through it all, DeAdriene and her husband have been amazed by their daughter's strength of spirit and joyful heart in the face of adversity.

"Jordynn's taught us not to sweat the small stuff. If it doesn't work out, try again," said DeAdriene. "We complain about simple stuff, and that girl never complains. To watch Jordynn learn how to jump was amazing. She tried again and again. Even if she fails, she is willing to try again. Often times, I don't try in certain situations because I'm scared I'll fail."

Today, Jordynn is a true "girly girl," immediately recognizable by her glammed-up walker. She loves having her nails painted, watching Disney movies and baking. Against all odds, this little bull works hard every day to find her place in the world.

"My husband and I have learned so much from her, and we're supposed to be the parents," said a smiling DeAdriene. "It's amazing."

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