A little cold rain didn’t seem to dampen spirits as hundreds of people turned out to watch the seventh annual Festival of Lights, which lit up Blue Earth Plaza in glowing hues Friday night.
Three-year-old Faith, 4-year-old Lydia and 8-year-old Silas Herrman were Santa’s helpers that evening, flipping the switch to light the 65-foot Christmas tree. It was a particularly special evening for the family as just a year ago, Faith had taken her first steps outside when she walked through the lighted tunnel.
Faith was born with spina bifida, a birth defect that occurs when the neural tube, the structure from which the brain and spinal cord form, fails to develop or close properly, causing damage or defects in the spinal cord and bones in the spine.
Faith’s mother, Allison, said her daughter was beginning to learn how to walk last year, and while she’d been practicing at home and therapy centers, she hadn’t had a chance to walk on her own outside. The family took her to Blue Earth Plaza to enjoy the Christmas lights one evening but didn’t expect her to walk all the way through the lighted tunnel.
Allison shared a video of the moment on the Festival of Lights Facebook page, and organizers later invited the family to do the honors of lighting the plaza this year.
“That was just a really special moment for us,” Allison said. “It was a really neat evening because we’d never knew if she was going to be able to walk at all … We were really proud of her being able to explore the lights and environment in an independent way. With her disability, we kind of have to celebrate milestones whenever they happen. A lot of times they’re delayed, but we just appreciate them that much more.”
Even at 3, Allison said the journey with her daughter has been a long one.
When she was 24 weeks pregnant, Allison and her husband Eric traveled to Colorado for in-utero surgery that would close the opening in Faith’s neural tube, helping prevent further damage. Allison said she remained in Colorado for three weeks and then stayed in the Kansas City area for about a month so she could be near a hospital with a high-level neonatal intensive care unit in case she went into preterm labor, a potential side effect of the surgery. Ultimately she did go into preterm labor, and doctors delivered Faith at 32 weeks.
“It was a tough time,” Allison said. “My middle daughter had just turned a year old, so still very much dependent on me at that point. We were fortunate to have a lot of family step up and help care for our kids since I was in the hospital, and my husband traveled with me to Colorado for that surgery.”
From there, Faith remained in the NICU for 48 days, learning how to eat and breathe on her own. Allison said the surgery helped delay Faith from developing hydrocephalus, a buildup of fluid in the brain, reversed a malformation that could hinder swallowing and breathing, and enabled more mobility in Faith’s legs than what would normally be expected.
Though Faith’s condition is one she must continuously manage, such as through surgery to drain fluid from her brain and regular physical therapy to strengthen her leg muscles, Allison said she’s just like any other 3-year-old and keeps up with her siblings.
“She surprises us every day with what she’s able to do, despite the disability,” Allison said. “Faith is just a very joyful and happy little girl. She’s smart and talkative. People with spina bifida, they can live happy and joyful lives, and they can enjoy things like the Festival of Lights.”
For now, Allison said Faith’s future involves waiting and seeing how her condition develops or improves, but the family would continue to support her to achieve what she wants.
“She’s named Faith for a reason,” Allison said.
“I think early on when we found out about this, it was kind of devastating news to think that your child is going to have struggles, but we have a strong faith in the Lord.
“That’s what kept us hopeful for the future and kept us believing that everything was going to be OK. We just take everything one step at a time.”