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Courageous Teenager Stares Down Rare Blood Disorder

Daniella Seymour. (photo provided)

An interview with… Daniella Seymour, a brave 13-year-old battling a rare blood disorder called  hereditary hemorrhagic telangiectasia.

By Mark Gerlach  

When she was 11 Daniella Seymour wasn’t feeling well. She was having nose bleeds and was feeling tired.

“I kept telling her I was going to take her to the doctor’s, but she kept saying ‘no, no, no, I feel OK,” Paula Roberts, Daniella’s grandmother, said. Roberts went to pick Daniella up at Leptondale Christian Academy, which has since closed, and all of the other kids were running around; Daniella had her head down. Roberts knew her granddaughter needed to see a doctor.

But doctors didn’t know what was wrong with her and kept prescribing her nose sprays.

Roberts asked a doctor to test the child’s blood because her biological mother, who Daniella has no contact with, has low iron. The next day the doctor called Roberts and instructed her to pick Daniella up from school and take her to the emergency room. She needed a blood transfusion.

Daniella was diagnosed with a rare form of hereditary hemorrhagic telangiectasia, or HHT, in 2014. She had to undergo a procedure to have numerous polyps removed from her colon. Further tests were run to see if she had arteriovenous malformations, or AVMs, in her lungs, brain, and elsewhere. One was detected in her brain. She was told to come back and it could be taken care of when she was older. However, doctors underestimated the severity of the situation.

To read the full article see the Friday, Sept. 9 editions of The Sentinel and Orange County Post. 

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