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Girl with rare genetic disorder welcomed back to school

Posted October 23, 2013

Hailey Howard
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— At the tender age of 7, Hailey Howard has already undergone three open-heart surgeries to correct problems caused from a rare chromosome disorder called DiGeorge syndrome.

The last surgery kept her out of school for more than two months.

But Hailey returned Wednesday to her classroom at Ed V. Baldwin Elementary School in Hope Mills, where everyone gave her a big welcome.

“She goes above and beyond,” said her teacher, Rachel Frye. “She’s very caring. She’s the first person to give someone a pencil if they need it.”

Hailey Howard Hope Mills girl battles rare chromosome disorder

A welcome-back banner hung outside her classroom, with a message written in second-grade penmanship: "Dear Hailey Bug, we miss you so, so much." Teachers and staffers at the school wore T-shirts that read, “Keep Calm and Believe. Team Hailey.”

Her mom, Christina Howard, wore the shirt, too.

“It’s nice to see her as a typical 8-year-old child,” Howard said. “It’s just very nerve-wracking to be able to let go. I have a hard time letting go.”

Hailey was born on Christmas Day, and her first surgery happened when she was 3 months old, after doctors diagnosed her with DiGeorge syndrome. The rare disorder is the result of the deletion of part of the 22nd chromosome and causes heart abnormalities and autoimmune problems.

Hailey has seven heart defects, rheumatoid arthritis and tooth loss. Her third surgery was in August at Duke Children's Hospital.

“The doctors were not very optimistic that she would even make it to her first open-heart surgery,” Howard said. “She just amazed doctors from the get-go.”
During the latest surgery, doctors gave Hailey a new heart valve that should last her into adulthood.

“Obviously, she’s still tired from the surgery itself. It takes a lot out of you,” Howard said.

That’s why Hailey is doing only half-days in school.

Her health battles have helped Hailey dream big. She knows exactly what she wants to be when she grows up.

“A doctor,” she said, “because I have a bunch of doctor stuff at my house.”

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  • illegalsgohomerevised Oct 25, 2013

    Best wishes little one that your life becomes much easier for you!

  • simplelogic Oct 24, 2013

    Not all souls choose to come to earth - only the brave ones. This child is obviously one of the elite, the bravest of the brave. She is awe-inspiring, in every sense of the word.

  • itsmyownopinion Oct 24, 2013

    My heart goes out to this child and her mother. My little girl was very ill from age 10 to 14 and I thought we might lose her. Traveling all over the US to hospitals for help was hard. Being in a hospitals for a month at a time was hard. I wish you all the best. My "little girl" is now an amazing adult enjoying life to the fullest.