Jenna and Justin Ford understand that their daughter Jolie will live a different version of “normal” than many of her cousins and friends.

But they decided to reject any negativity associated with that long ago. 

“She is perfectly made,” Jenna said. “She was meant to be here and we can’t imagine a different version of her. Every night in our bedtime prayers, we thank God for her perfect personality, her perfect body and her perfect purpose.”

After a diagnosis of spina bifida, months at Nationwide Children’s Hospital and eight surgeries, Jolie is growing and thriving with her family in their Heath home.

Although she faced many medical challenges in her first year of life, her parents are excited for the possibilities that the future holds.

“This is her life and we feel grateful that we get to take care of her and walk through this journey with her,” Jenna said.

The beginning of the journey

When Jenna and Justin had their 20 week anatomy scan, doctors discovered that Jolie had clubbed feet and a sac along her spine.

Further tests revealed she had myelomeningocele spina bifida, the most severe form of the neural tube defect, which affects the spinal cord.  She also had hydrocephalus and a Chiari malformation, which affected the back of her brain. 

While Jenna was still pregnant with Jolie, there wasn’t much information about what her outcome might be. Doctors told the Fords their daughter might never be able to walk, talk or respond to the world. But Justin and Jenna kept seeing their daughter move her legs during ultrasounds and believed she was going to defy expectations.

Two hours after she was born, Jolie was rushed to Children’s Hospital. At 12-hours-old she had her first surgery to correct the opening in her back and put a shunt in her brain to drain excess fluid. 

Over her first three months, Jolie experienced issues with her shunt, that once required she could only be held by her parents for 15 minutes a day.

But even when she faced big challenges, she would squeeze her parents’ fingers tight, Justin said.

“She’s a fighter,” he said. “It’s part of her personality.”

‘Living and thriving’

At three months old, Jolie went home from the hospital on oxygen. 

Her family reached out to the Licking County Board of Developmental Disabilities to start Early Intervention services and help Jolie start meeting milestones.

Working with LCBDD Physical Therapist Annie Green, Jolie began to make progress, but her respiratory challenges continued.

Jolie was having episodes where her airway would suddenly close and she would stop breathing. Her parents had to resuscitate her multiple times a day.

When she went back into the hospital to have some changes made to her shunt, her team made a commitment to stabilize her breathing. 

While the exact cause of her airway contractions remains a mystery, her parents and medical team ultimately decided that a tracheostomy and a ventilator would give her the best quality of life.

Some people might see a trach as limiting but for the Fords, it has been a gift that has given their family peace and allowed Jolie to leave the hospital and enjoy walks with her family, picnics with her cousins and a trip to the zoo.

“We were in survival mode, and that was not a life,” Jenna said. “Now she is living and thriving. It’s been such a positive thing for her.”

‘She gave us some hope’

Since her trach surgery, Jolie has been able to interact more with her family. She’s sitting up, smiling and giggling, getting excited about toys and loves to watch “Rachel and the TreeSchoolers” videos.

“It’s a night and day difference,” Jenna said.

She’s back to weekly physical therapy with Annie, who is working closely with Jenna and Justin  to find ways to help Jolie gain strength and communicate her needs.

The Fords’ dog Charming has been a great motivator for some of her therapy sessions, Jenna said.

Working with Annie has given the Fords the ability to help Jolie learn new skills at home. She’s also connected them with resources and provides emotional support to their family, Jenna said.

“She was there from the get-go when we didn’t know anything (about what to expect for her),” Jenna said. “She was the only one to come in and say, ‘ This is what we CAN do.’ She gave us some hope.”

Celebrating the journey

When they first found out how medically complex Jolie would be, the Fords felt lost and desperate for information.

Now they have connections with other families, social media communities and resources, but those early days were difficult.

It is important to the Fords to share their story, and help other families in similar circumstances.

“We want to help people who are further behind on the journey than us,” Jenna said.

Jenna started Jolie’s Journey accounts on Facebook and Instagram where she shares photos, and celebrates her daughter’s accomplishments.

“Instead of comparing ourselves and comparing her to other kids, we want to create a dynamic for her and the people in her life that this is just a different version of normal,” she said. 

They are thankful for their close knit families and supportive church community who have worked to show that Jolie will always have a place with them, Justin said.

Although she’s had to adapt to her medical equipment, Jolie finds new ways to communicate and express her sassy personality, especially when she wants to watch another video.

“We want to stress that she’s a typical kid,” Justin said. “She doesn’t know anything different.”

Early intervention (also known as EI)  is a statewide program for infants and toddlers — birth to age 3 — with developmental delays, disabilities or medical conditions likely to result in delays. Anyone can make a referral to the program, which is offered to families at no cost.

For more information about Early Intervention in Licking County, go to https://lcountydd.org/birth-to-3/. To make an EI referral, please call 1-800-755-4769. You can also make a secure online referral at http://bit.ly/ReferToHMG.

Some photos provided by the Ford family.