Norah's Story

At 2 years old, Norah loves Disney movies. One of her favorites, Winnie the Pooh, said to a friend, “I knew when I met you an adventure was going to happen.” Norah’s family and friends could say the same thing. Norah’s adventure began when she was born with spondyloepiphyseal dysplasia congenita, a skeletal disorder.

Due to respiratory distress at birth, Norah had a tracheotomy when she was just 6 weeks old.  Following the tracheotomy, Norah’s respiratory challenges required her to stay on a ventilator used only in the Intensive Care Unit. Her respiratory health was so fragile that Norah would turn blue during simple tasks like a diaper change. Norah’s parents say the staff at Primary Children’s Medical Center saved her life multiple times.

During her 10-month hospital stay, a Child Life Specialist worked to give Norah the most normal life possible, including giving her new sensory experiences each day. They even decorated her hospital room with Winnie the Pooh.

To quote Winnie the Pooh, “Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.” Norah’s family is grateful to the many doctors, nurses, therapists, and other hospital staff who cared for her. Norah’s mother says, “As a family, we were always taken care of.”

Norah is home and “drinking in life.” She smiles most of the day and just like a Disney princess, she is smart, strong, brave, and charms everyone she meets. 

Your donation helps children like Norah receive the care they need. Please give generously to Pennies by the Inch and make life adventures happen for every child.

Infant NorahNorah



 

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