Ellery McIndoe has had challenges most people can’t imagine. She also has lots of personality, a big, bright smile and a ton of can-do spirit. In the scheme of things, the challenges don’t seem to be holding her back from being a happy, active, smart 7-year-old little girl.
For her mom Alison, though, getting to this point hasn’t been the easiest journey.
Ellery was born in China, and she spent the first five years living in the orphanage system that China maintains to care for children the government considers to have severe special needs.
Alison, a single parent, had wanted to adopt a young child from China, and she spent several months looking at the profiles of different children with special needs.
“It was a little scary initially,” Alison said. “I passed her by the first few times. You don’t necessarily know the extent of their situation. It could be a heart condition. It could be blindness. I knew very little about her condition.”
She finally learned that Ellery had been diagnosed with arthrogryposis, a rare condition that developed in utero. The condition causes contractures, where one or more joints become permanently fixed in a bent or straightened position, and muscle weakness. Alison knew Ellery had some surgeries in China but not much else about her care.
She adopted Ellery in November 2019. First, she had to help Ellery adjust to her new situation. Five years old, living in a new country with a new language and a new family — it was overwhelming.
“She was very timid and very frightened the first few weeks,” Alison said. “I could literally not be out of her sight at all. She came to work with me, even meetings with clients, and she would just sit there and pretend to take notes, like I did. Or she would make pretend phone calls. She likes to do whatever Mama does.”
Then Alison went to work finding the medical care Ellery needed, starting with surgeries at Nemours Children’s Hospital in Wilmington, Del. In the summer of 2020, doctors operated on her right elbow, wrist and thumb, with the goal of giving her more flexibility in the affected joints and improving her fine motor skills so she would better able to do daily tasks like feeding herself.
They started coming to Schreiber for services about a year ago. Ellery receives occupational therapy with Amy Mostellar and physical therapy with Christen DeSarro.
“In OT, it’s really a struggle to figure out ways to help her care for herself,” Alison said. “She has fingers, but they don’t move a whole lot. She’s learned to adapt. She can do a lot with her toes: She can color, and she can almost tie her shoes. She loves to swim.
“Just the fact that she sees she can do these things gives her so much confidence. … She just runs with it. She beams.”
Ellery’s newfound confidence shows up in little ways. Like when she smiles and laughs and squeals, “Push me higher,” on the swing in OT.
When she first started at Schreiber, she had trouble grasping her hands together to hold on while she swung. Now? No problem. Those little fingers are stronger.
Or the way she can maintain her balance in PT.
“When she started, she fell all the time,” Alison said. “I worried about her. I thought I might have to get her a helmet, because when she falls, she can’t really catch herself with her arms. Now, she rarely falls. Her balance is so much better. She can walk up the steps now by herself.”
“I’m still close by though,” she added, with a smile.
She described the progress as slow and steady.
“You almost don’t realize it’s happening. But then you see her on the swing and you think: ‘She couldn’t do that before.'”
The shy, quiet 5-year-old has given way to a confident, bubbly 7-year-old, a foodie (she loves anything spicy) who enjoys sewing (with her feet!) and play dates with friends.
And her experience at Schreiber has played an important part of that evolution.
“(Schreiber) is a wonderful place, and we’re so thankful this is here. This is a joyful place, and Ellery fits right in.”