Pictures line the halls of United Ability’s campus, documenting lives transformed. One captures the winning smile of a Ukrainian-born boy named Vanya. He’s got a cool prosthetic in place of the lower part of his left leg, and a toy train he takes everywhere. When his parents adopted him at age one, he couldn’t hold his head up. Now, thanks to a team of skilled therapists and his own hard work and determination, Vanya is a thriving 11-year old. Here is his story.
Meet Vanya, his mom Nancy + his United Ability therapist Marliese
To learn more about Vanya, I spoke with his mom, Nancy Smith, and United Ability Physical Therapist Marliese Delgado.
The moment Nancy first saw a picture of Vanya, “something about him told us we needed to go get him.”
When the Smiths left for Ukraine, they knew he had a below-knee amputation of his left leg. When they met him in person, he was 12 months old and “completely limp, like a newborn in a lot of ways. He couldn’t hold his head up.” Later, they learned that he has cerebral palsy and a list of other disabilities.
Luckily, they had already made arrangements to connect with UAB’s International Adoption Clinic as soon as they got back to the US.
That appointment led to assessments and a referral to United Ability (then called United Cerebral Palsy).
Getting connected with United Ability
United Ability opened up a world of supports to the Smiths.
After an evaluation appointment at the Ability Clinic, Vanya began receiving United Ability’s specialized Early Intervention (EI) services at home—his family also received training on how to help him. The at-home Physical (PT) and Occupational (OT) therapy helped him catch him up with developmental milestones he hadn’t met yet. When Vanya aged out of Early Intervention at age three, he began receiving PT and OT services in the Outpatient Clinic, where Marliese met him.
One of the first orders of business was getting him a prosthetic and teaching him how to stand on it. Then they had to work on developing muscle tone, and work through a lot of sensory issues.
“At first, he would scream and cry the whole time. Now he loves it and thinks it’s his second home. It was very hard to get him to engage in anything. He had no play skills and wasn’t even interested in toys because he had spent the first 12 months of his life in a crib doing nothing.
The thing about the therapists at United Ability is that they’ve always met him where he was, and Marliese found the key to motivating him and getting him to work. They were able to take what he was willing and able to do and make it work for him. Even if he just wanted to line up the toys, she would work with him to make that fun and something he would work for.”Nancy Smith
Later, Vanya started going into the clinic for additional PT and OT for his sensory needs. He did a lot of swinging while Marliese worked with him on core strength, balance, crossing the midline with his hands and learning to use his right arm.
A year or two later, they added in speech therapy.
Marliese said “early on, a lot of the work was really getting to know him, figuring out what he loves and using that to motivate him to pull to stand, because little kids don’t care about walking a lot of the time.”
Milestones along the journey at United Ability
Every parent knows that some of the most joyous moments of raising their children come at the big milestones. Here are some of Vanya’s:
- Gaining head and neck strength, learning to roll over, then army crawl.
- Learning to walk with a walker and a prosthetic leg.
- Starting preschool with Hoover City Schools, even though he still wasn’t talking, had a lot of feeding and motor issues and continued doing intensive outpatient therapies.
- Going from being almost completely nonverbal, using an assistive communication device, to being completely verbal right before starting kindergarten.
- Transitioning to a neighborhood school for kindergarten.
Where Vanya is now
Vanya’s currently in his final year at Brock’s Gap Intermediate and is looking forward to starting middle school next year. According to everyone who knows him, he’ll “talk your ear off”, never forgets a person’s name and loves stories and windup toys.
He now loves going to see Marliese and looks forward to it every week. He complains and makes a lot of noise when he’s there, but he works hard because he loves her and loves working with her. “He’s definitely come further than we ever thought he would,” according to his mom.
The last word
When I asked Vanya’s mom what she’d like to say to other parents in a similar situation, she said:
“There’s good help out there. Look for all the resources that you can to help your child be their very best and live their very best life. I’ve gotten so much support and reassurance and just the knowledge of ‘I can do this—I can help my child.’ I’m not perfect; I’m not a therapist, but I can do what he needs.’”
Reflecting on the years she’s had with Vanya, Marliese said:
“You evolve with the kids and find out what they like. You have to make sure that they can trust you—that you do what you say you’re going to do. If I say to him, once you let go, if you take three steps to me, I’ll be right here and you back up, you’ve lost their trust. So it’s really developing trust as you’re motivating them.”