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Twin Tiers girl fights rare disorder

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Bradford County girl battles rare disorder

Just a few months ago, a happy, 8-year-old little girl came down with the flu. Her symptoms quickly became more severe and landed her in the emergency room. 

“We got into the room to recovery,” said Teegan’s mom Sarah, “and it wasn’t 30 seconds we turned around and there stood a neurologist telling us that there’s bad news that she had a stroke.”

Teegan was then sent to Rochester for further testing. That’s where she got the diagnosis that would change her life forever. 

“He called us up to the room and he says well I got some good news. Good news is I don’t know how to take it, the good news is we know what it is. The bad news is its Moyamoya, and we looked at each other like who came up with this word like are we really hearing, it was crazy.”

The inflammation in Teegan’s body from the flu had triggered her Moyamoya, a rare disease that restricts blood flow to the brain causing a number of side effects. Some of which can be fatal if untreated. 

“Her speech and her mobility and she was not using the restroom just things that she’s always done.”

Doctors told Teegan she would need open brain surgery immediately to decrease the chances of another stroke. 

“I’m not just going to let anybody operate on my child. I wanted the most experience for her. I didn’t care where we had to go.”

Teegan’s mom deciding on a world-renowned Moyamoya surgery program in Boston. Her family anxiously waiting for more than six hours as Teegan underwent the operation.  

“She came out and she was in the IC overnight and 24 hours postop was playing on the floor in the playroom so we’re very blessed and lucky.”

Surgery, however, is only the first step in treatment. There’s still a lot of unanswered questions.

“Because of it being a vascular and she’ll make sure that she’s not going to have any other trouble we have gone through the whole testing for to make sure she doesn’t have an autoimmune disease or anything like that and so far everything has come back good.”

While no one knows exactly what the future will hold for Teegan, things are looking up right now. 

“We love her the way she is and we just want her to be healthy and happy and if she needs assistance for her whole life with certain things we don’t care we just don’t want any more strokes just for her to be healthy.”

With national Moyamoya day just around the corner, Teegan’s family is hoping to raise awareness for the rare disease and others like it. 

“It doesn’t matter how they act and it doesn’t matter what they look like or it doesn’t matter how they talk or anything,” said Teegan’s sister Haven, “but you should be strong for them and kind and help them and other things like that.”

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