Hailey's journey

Editor’s Note: This is the second 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.

Since she was a baby, Hailey has been cared for by dedicated staff.

Since moving to Anne Carlsen Center for Children as a young girl, 13-year-old Hailey has been surrounded by people attentive to her every need, from her mother, Sarah, and a close-knit family to a full staff of caregivers and teachers.

She has accomplished many things but now as she becomes increasingly weak, she is beginning to regress. All who know her say is that her spirit and love of life, however, remain strong.

Hailey has been given a full life at ACCC and has been challenged to do many things never thought possible when doctors told Sarah her baby wouldn’t live to be a year old.

The biggest thing, said Sarah, is that she learned to use basic sign language to communicate things like “eat,” “drink,” and “more.”

“It got to be that ‘more’ was to tell me she liked something,” said Sarah. “We were swinging one time and she kept signing ‘more’ and during her bath, I’d spray warm water on her and she’d sign for more. “I never expected that she’d ever be able to do that. I know it was because of the whole group (of ACCC staff) working with her.”

Now her way of communicating is very sensory-based. She laughs when tickled or looks at you when you blow in her face. It’s life’s simple pleasures that Hailey relishes.

She used to be able to walk with some assistance and feed herself but in the last few years she’s lost those abilities.

Top: Hailey's mom, Sarah, has been committed to providing her the best care possible. Bottom: Hailey enjoys many activities at ACCC, like having her face painted during a part with a visiting Girl Scout troop.

Born with a rare chromosome disorder, Hailey has frequent seizures, vision and hearing impairments. She’s unable to verbally communicate. But her most debilitating condition is her failing heart.

“Her heart problem makes her really tired,” said Sarah. Her school days are now limited to half-days to give her adequate rest.

Her heart has a hole in the middle, causing her blood to cross-over so the blood with carbon dioxide and blood with oxygen mix and she therefore doesn’t carry enough oxygen through her body.

“With each lab study in the last couple of years,” said her rehabilitation nurse, Jan Torkelson, “we see more of a change. Her oxygen level (in her blood) is gradually decreasing.”

Sarah says she takes for granted the level of care Hailey receives. “The nurses know her so well. The LSTs (direct care providers) care for her so well. As a parent, I feel so supported. I leave knowing she’s getting all she needs.”

A team of therapists, her teachers, and medical professionals work daily to help Hailey.

Her therapies now consistent of exercises to help with her circulation and stretch her muscles…especially those in her chest to keep room for lung expansion and comfort.

“She’ll come in and work as hard as she possibly can,” says her physical therapist, Tara Roaldson, “but on days she doesn’t feel good or doesn’t want to work hard, she’ll let you know.”

In school, her teacher incorporates a lot of sensory things into Hailey’s day. “I want to give her opportunities to enjoy what she’s doing and be happy,” said her teacher, Pam Schauer. And they work on having Hailey make choices, usually by looking at or touching the book, music or game she wants.

Schauer’s goal of helping Hailey align with Sarah’s. “I want her to be as comfortable and as happy as she can possibly be,” she says.

Her education, recognizes Sarah, is very tailored to her needs and abilities. “They really go back to whatever level she’s at. A regular school is completely inappropriate for her,” she says. “There’s no comparison to Anne Carlsen Center with the classroom and therapies she gets and how everyone works together.

“There’s no question this is the best environment for her to learn. I know she feels safe and comfortable here and that she’s proud of all she does.”

Sarah feels strongly that Hailey deserves every opportunity every other child has and that ACCC is helping her provide that for Hailey. “Just because she has different needs doesn’t mean she shouldn’t have as full and as happy of a life as other children.”

Next time, read about how Hailey’s perseverance and love of life has impacted people around her and what lessons she has to share with others.