Molly's Kids: Mother looking for help - do you know anything abo - | WBTV Charlotte

Molly's Kids: Mother looking for help - do you know anything about HAE?

CHARLOTTE, NC (WBTV) -

“Hi, Molly. My name is Sue Smuda and my daughter who is 14-and-a-half years old (you know that ‘and-a-half’ is important to a teenager) was just diagnosed with a rare disease called HAE. Hereditary Angioedema. I am reaching out hoping you’ve heard of it. We are looking for help for Abigale.”

Or, Sue wrote, looking for understanding. Or advice. Or maybe someone in the Charlotte area has gone through the same issues as Abigale or knows someone who has.

Sue said she and her husband feel lost. Besides some basic sites on Google that define the illness they can’t find much. Only place they’ve found so far for help is a center in California.

“Not much is known about this disease that has affected our daughter's face, throat, eyes and now starting to cause swelling of the gums,” Sue said. 

“Abigale is a very vibrant, strong young woman. She dreams of becoming a pediatrician.  She is on the Levine Children's Hospital Teen Advisory Council, a 4.0 student, a model, a competitive cheerleader and a pageant girl. We say a typical ‘Southern Girl’.”

She also has a twin brother.

Her parents want to know if HAE could possibly affect him.

Sue said Abigale was diagnosed less than a year ago. She’s on a medication called Xolair. Sue says her daughter’s swelling is getting worse.

Comment on Molly Grantham's Facebook page if you have any information or think you could aid in hooking up them with someone who does.  Sue (and Abigale) will be reading all responses.

Might as well try it this way, right?

#MollysKids

**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**

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