SPRINGFIELD, Ill. (WCIA)– An area six-year-old in is not letting a rare disorder slow her down.
Although she plays just as hard as any other grade-schooler, her parents say they were not always sure she would be able to live her like she does right now.
For Ayla Nicolaides, a feeding tube is the best way for her to eat. Her parents said taking her off formula is one of the best decisions they have made for her.
It may be hard to tell now but Ayla Nicolaides had a rocky start coming into the world.
“Ayla was born with a rare non-gentic condition called vacterl,” said Ayla’s mom, Alaina Nicolaides.
Vacterl is acronym for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies and limb abnormalities.
People with at least three of these characteristics are diagnosed with the rare disorder. Ayla has five of them.
When she was three days old, she underwent surgery to attach her stomach to her esophagus.
“As a result of that surgery, Ayla developed what they call tracheobronchial malacia. Which basically means she has a floppy airway, her airway is just not as firm as most people. It resulted in a lot of episodes where her airway would collapse and we would have to bag her to stint her airway back open,” said Alaina.
Because of her trach, oral feeding was always a challenge. After feeding her breastmilk for a year, her parents switched to formula. Issues continued along Ayla’s journey as some of the formula made her sick.
“The formula wasn’t sitting well with her, she couldn’t throw up. She, she just looked uncomfortable,” said Ayla’s father Corey Nicholaides.
Her dad eventually started blending her food before buying real food blends to put in her tube.
“The results have been phenomenal for Ayla and everybody is happy with it. Everyone is on board, her surgeon included,” Corey said.
Her parents said ever since she made the switch, Ayla has been thriving. “She is a warrior, she is a fighter,” said Alaina.
Ayla’s parents said her airway is still collapsing but you would never be able to tell watching her run around.