Hailey's journey

Editor’s Note: This is the first in a series of articles The Ambassador will bring you in 2006 about a young girl who has faced many physical and medical challenges. With the help of a loving and committed family and a dedicated group of teachers and caregivers, Hailey is exceeding early expectations.

As an infant, Hailey's mom was told her daughter wouldn't live to see her first birthday.

Sarah Charley’s pregnancy was textbook. “Before birth, I didn’t know anything was wrong. Right away when she was born, I knew”

Doctors in Grand Forks, N.D., where Hailey was born, were puzzled. It was quickly evident that something was wrong. Soon after she was born she began having seizures. Three days of extensive tests indicated a heart problem, too.

She was flown to the University of Minnesota for more tests but still there were no concrete answers.

The best the doctors could say was that Hailey had a rare chromosome disorder. So rare, in fact, that there’s not even a syndrome name for it. And doctors, with nothing to compare it to, really didn’t know what to tell Sarah about her daughter’s prognosis.

She was told to take Hailey home and love her. “I was told she wouldn’t see her first birthday.” Hailey is now 13.

It’s always hard not to think about that early prognosis,” Sarah said. “Yet it helps us celebrate each year with her even more."

When Hailey was about one-year-old, her mother found Anne Carlsen Center for Children and began entrusting staff with her daughter's care.

A few months after she was born, they moved from Grand Forks to Minot, N.D. to be closer to family but it became increasingly difficult to meet all of Hailey’s needs.

In addition to her heart condition and seizures, which, according to Sarah, are progressively intensifying as she gets older, Hailey isn’t able to walk, her hearing and sight are impaired and she cannot verbally communicate.

“We were coordinating and utilizing all the resources available to us, but it still wasn’t enough,” said Sarah.

Soon after Hailey was born, Sarah was inspired to go to nursing school. It was difficult to find daycare so her mother and grandmother became daily caregivers too. When Hailey was about one year old, Sarah’s aunt showed her some information about Anne Carlsen Center for Children.

Answered prayers

When Hailey was still a baby, Sarah began entrusting strangers at Anne Carlsen Center for Children to care for her struggling daughter.

“It was hard to admit that I wouldn’t be able to do it on my own,” she said, “but my family helped me see that having her home wasn’t the best thing for me or her.”

And those who were at first strangers quickly became part of Sarah’s extended family. Today, when Sarah leaves after one of her many visits, she says, “I’m leaving her with family.”

Parents of children with needs like Hailey’s can’t do it alone, Sarah says. “Once you can accept that, it releases so much of the stress on yourself. You don’t have to feel like you need to do everything yourself.”

As soon as Hailey moved to ACCC Sarah realized that she could never provide the level of services at home that Hailey receives here. “Each year that goes by I think it’s easier that she came as a baby. It’s just the way it’s always been,” she said.

At the same time, she adds, it’s always hard. “I feel guilty and sad that I don’t see her every day,” said Sarah, who now lives in Minneapolis but makes frequent trips to Jamestown and calls her daughter often.

Milestone moments are often difficult. Hailey’s most recent was becoming a teenager. “I can’t help but compare these milestones to other kids her age and think about what we would be doing (if Hailey didn’t have a disability). That’s when things get tough,” she said.

And, Sarah says, it’s often hard that Hailey can’t talk. “But I can’t tell you how many dreams I’ve had where she’s talked to me and said, ‘I love you.’”

Anne Carlsen Center for Children has helped Hailey learn to communicate. The care she receives here has a lot to do with the fact that she’s far out-lived her early prognosis, says her mom.

“For her, I know she’s exceed all expectations that we’d ever imagined. She’s the best person she can be because she’s here.”

Next time, read about howHailey has grown and changed and how Sarah and her extended family at the Anne Carlsen Center for Children are helping Hailey thrive.