Meet Hailey: 2019 Family Advocacy Day Child Champion

Hailey is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Hailey will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Hailey is an extraordinarily strong minded 11-year-old who loves to sing and dance.

An unthinkable event happened when Hailey was a two-year-old, she fell in the bathtub and broke her neck. The accident had left Hailey paralyzed from the neck down, unable to move her arms and legs, and the long-term outlook was disheartening.

“They told us she wouldn’t ever talk, wouldn’t be able to eat on her own, wouldn’t be able to walk — wouldn’t be able to do anything,” said Hailey’s grandmother.

Hailey met Dr. Keane at Mt. Washington Pediatric Hospital (MWPH) who specializes in working with children with complex medical needs. Hailey started an intense course of weekly therapy, including physical therapy to help her move around and occupational therapy to help her with activities of daily living. She bonded with her therapists and looked forward to each appointment as a special sort of playtime.

And Hailey started to blossom! As she worked with her therapy team, Hailey began to achieve milestones. She gradually came off the ventilator. She taught herself how to sit up, then to scoot herself around. She is now able to eat, talk clearly, move with minimum assistance and will soon be off of her trach. She proved that determination strongly outweighs physical limitations.

She is resilient beyond her years and transforms her frustration into motivation not just for her, but for all who care for her. Hailey's “condition” puts no limits on her aspirations. She is not “disabled”, but differently able. Her capacity to follow any dream she is committed to is an inspiration to her grandmother and all who come in contact with her.

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