There was no indication on the ultrasound that Tia Velotta and Coty Johnson’s daughter Aleigha would have a deformity. But when she was born, both parents could see that wasn’t the case.
“Did I just see what I think I saw?” Tia remembers thinking. “You just can’t take that image away. It was a complete shock.”
Aleigha, now 5 years old, was born without her ulna bone in her right arm. She was missing her elbow joint, and her wrist was fused where her elbow should have been. Her left arm wasn’t as deformed, but the elbow joint was fused together on this side as well. She only had a total of seven fingers.
“I already had three kids,” Tia said. “I had the mother thing down. But I didn’t know how to be a parent at first to a disabled child.”
Both Tia and Coty remember the tough questions during their hospital stay—questions you don’t want to hear after welcoming a newborn. Do you want to consider adoption? Do you want to amputate?
“It’s like everyone saw a problem,” Coty said. “But I just saw my daughter.”
After released from the hospital, Tia and Coty were immediately sent to Kosair Children’s Hospital (now Norton Children’s Hospital) in Lousiville. They also visited Shriners Hospitals for Children. The first few weeks of Aleigha’s life consisted of numerous doctors appointments.
The first two specialists that saw Aleigha wanted to amputate. “I didn’t want someone cutting my child,” Tia said. “We wanted to give her the chance to adapt to what she has.”
Doctors determined Aleigha’s chromosomal and genetic testing were normal. Ultimately, there was no diagnosis of Aleigha’s deformity.
“As she has gotten older, she has adapted to what she has,” Tia said.
Tia and Coty take Aleigha to Shriners every two years to check bone growth. In her last visit, her doctor suggested hand therapy and no longer recommended surgery. Because she can’t hold much weight, Aleigha will need extra attention through therapy to help her learn to accommodate. Things like carrying a lunch tray or putting a book on a high shelf prove more difficult for Aleigha than other children.
Aleigha is in kindergarten at Eastview Elementary. Like so many little girls her age, Aleigha loves the color pink and adores Princess Elsa. She enjoys reading and being outside at the park. Despite her deformities, she can write and color. But other things like buttoning her pants or zipping a jacket are more difficult. Tia has also invested in a sewing machine to hem long-sleeved shirts.
“I noticed yesterday for the first time, she put her socks on by herself,” Coty said. “And she put them on correctly.” After seeing her conquer her socks, Coty challenged Aleigha to put her shoes on by herself too. And she did. “They didn’t have laces, but the milestone was reached,” Coty said with pride.
And although Aleigha has overcome many obstacles in her five years, she does experience her share of bullying.
Tia says many days her daughter gets off the bus crying. Aleigha hears people talking about her or sees them pointing at her. “It makes her sad and like no one wants to be her friend,” Tia said. “But I teach her, ‘it’s OK to laugh, just not at others.’”
Because of the bullying Aleigha has experienced, Coty says she often assumes any laughter is directed at her arms. “She instantly assumes she they are laughing about her,” Coty said. “I try to explain to her that not everybody out here is looking at you. Everywhere you go, people will have differences from one another.”
Tia and Coty recall a trip to visit family in Tennessee when they stopped at a rest stop along the way. A Vietnam veteran who was missing both arms had stopped there at the same time. “It came to a real shock to her almost,” Coty said. “To see someone of difference for the first time and to see how well he operated on his own.”
The veteran even showed Aleigha how he worked his prosthetics. “That encouraged her a lot,” Tia said.
Tia and Coty have always used their faith to help Aleigha understand why she looks different than other kids. If Aleigha is crying from bullies on the bus or struggling to get dressed on her own, Tia and Coty explain to their daughter that her arms are a part of God’s plan.
“Those are her angel wings she has had since birth,” Coty said. “God made her that way. Everybody is made differently. Being unique and different is what sets you apart. There are no two people exactly alike.”