Isabella Wiggins has dozens of hair bows. She squeals when she hears Justin Bieber sing, and, on Fridays, all she wants is $2 to take to school for a smoothie.
She is a typical 6-year-old girl. And she is so much more.
Born with schizencephaly, a rare developmental disorder caused by fissures, or gaps, in her brain, doctors said she would never walk. The disorder affects only 1.5 of every 100,000 people, according to the National Institutes of Health.
But Isabella, 4-feet tall with her brown hair always pulled into a ponytail, rides her bike, plays video games and runs through the house, either with her walker or leg braces or on her knees.
“With Isabella, as long as there is a want to do something, she’ll try her hardest to do it,” said her mother, Kristina Wiggins. “When she was younger, it was kind of upsetting when they would say that she wouldn’t be able to walk by herself, but you could see her really try. When you see a child really try at something, that’s when you know that they’re possibly going to be able to do it no matter what.”
In the first few months of Isabella’s life, her mother and grandmother, a physical rehabilitation nurse, feared something was wrong. Isabella missed the milestones that parents mark off — lifting her head, holding a bottle, crawling.
At 10 months, doctors at the LSU Health Science Center in Baton Rouge found the fissures in Isabella’s brain. Her grandmother, Gina Marino Tollefson, researched the disorder, but didn’t always share everything with Kristina Wiggins. Many children with more severe iterations of the disorder died young.
“I don’t think she realized the severity of what I was reading,” Tollefson said. “I didn’t always tell her the severity of what I was reading because I didn’t want to scare her.”
A single mother at 15, Kristina Wiggins said she wasn’t scared for Isabella once she learned that she would be healthy. The entire family had converged to help her.
“I feel like she was really given to this family for a reason,” Kristina Wiggins said, while sitting with her daughter in Isabella’s favorite red chair. “I feel like in many ways she has helped me grow up, and in many ways I have helped her grow up, and all of us come together to help Isabella with everything.”
Her therapists credit the family with keeping Isabella growing.
“The family didn’t treat her as a child of disability,” said Helen Bohan, an occupational therapist at McMains Children’s Developmental Center who works with Isabella. “They expect a lot more from her.”
Isabella is constantly surrounded by the large extended family she lives with. Her aunt and uncle, Autumn-Skye, 14, and Dakota, 13, just seven and eight years older than her, have been her playmates from the beginning.
When Isabella was 2, they would crawl around on the floor with her, showing her the technique. Then she started pulling up on furniture and kneeling down to walk on her knees, something she was never expected to accomplish.
“It made her see what she could be doing,” Kristina Wiggins said. “It made her really want to do what they were doing.”
In the summer, Autumn-Skye and Dakota spend a lot of time at a neighborhood pool with Isabella, teaching her to swim. They take her on trips to the water park, where Dakota will “fireman carry” her 90-pound body over his shoulders while climbing a ladder of ropes so his niece can zip down a water slide. At the bottom, she smiles and makes a sign pushing the tips of her fingers together: more.
“It’s really rewarding to see that she’s having fun because there’s so much she can’t do,” Autumn-Skye said. “It’s really rewarding to see her smile just like anybody else.”
Raising Isabella has not been without struggles. Many children with schizencephaly suffer devastating effects.
At 3, she suffered a seizure. While playing a video game, she fell forward, and her eyes rolled in the back of her head.
“That was when being a nurse doesn’t help and just goes out the window,” said Tollefson. “You panic.”
Tollefson took her pulse, blew on her face and rubbed and shook her. Then Isabella’s eyes fluttered open, and she looked a little confused at her grandmother crouched over her.
Isabella also chokes often when eating, a result of her tongue weakness. A sign she knows by heart is the international sign for choking — wrapping both hands around the neck.
At The McMains Children’s Developmental Center in Baton Rouge, Isabella receives therapy every week. She works with speech, physical and occupational therapists to develop real-world skills.
On a Thursday in late February, she was given a small pouch closed with a button, which Isabella had to open to reveal a card within. Usually she has to read aloud the word or number printed on the card.
“Come on button!” she said to herself, commanding her fingers to finally push the button through its hole.
Therapists all gathered around Isabella, rooting her on and remembering when things came so hard to her.
“Isn’t she precious?” said Helen Bohan, an occupational therapist. “I tell her all the time, when you were little, all you did was cry during therapy.”
When she first came to McMains as a 2-year-old, Isabella couldn’t sit up, Bohan said, and, because she always kept her thumbs tucked under her palms, she could not fully use her hands. Therapy caused her to use muscles she had never needed before, and Isabella cried often.
“She’s very determined,” Bohan said. “She’s very independent. She will tell you, ‘I want to do this.’ She’s very happy now.”
Done with the buttoned pouches, another occupational therapist handed her a card printed with a picture of Justin Bieber inside a triangle. Isabella shrieked for a moment at her idol, then received her instructions. She had to cut out the triangle, then write her name on the back to keep the picture. She cut quickly, then wrote in marker across its back and held the picture over her heart.
Isabella has surprised her family so much, they don’t know what to expect from her.
“She surprises us sometimes with the things she says,” Kristina Wiggins said, while seated next to her daughter. “She’s quick and she’s really outgoing. She tries really, really hard, and, hopefully, that will keep her going to where she ... no telling what she will be able to do.”
Then Kristina turned to Isabella and asked, “Want to be a dancer when you grow up? Want to be a cheerleader?”
While the family members know Isabella will always need them, they realize at some point in her life she will want more independence.
“I don’t know that I could part with her, but, hopefully in the future, she will be able to have a normal job and a normal life,” Kristina Wiggins said. “I really think with her progress and determination she’ll probably be able to do that. If not, I will keep her for as long as I can.”