Local boy spreads awareness on 'Rare Disease Day' in unique, inspiring way

Local boy spreads awareness on 'Rare Disease Day' in unique, inspiring way

PERRYSBURG, OH (WTOL) - A Perrysburg mother and her son turned a terrible situation into a celebration Wednesday, which was also "Rare Disease Day." And together, they spread the word about one particular disease throughout Perrysburg in a fun way.

By the looks of it  five-year- old Thomas Haynes is your typical five-year-old. He chooses running over walking  and loves superheros and his dad.

But Thomas may be the true super hero.

"Superheros are important to us and only the coolest people have ports," said Kim Haynes, Thomas's mother.

The port that Kim is referring to, along with medicine, will have to be used by Thomas for the rest of his life to help keep him alive after he was diagnosed with a rare disease that doesn't allow him to fight off infection. A diagnosis the family says took two years to get.

"She said 'Your son does not have an immune system and will never have an immune system,' and it knocked the wind right out of us. Our mouths were just open," said Kim.

In med school, doctors are told when they hear hoof beats to think horses not zebras. That means the most common thing is more then likely the diagnosis for that patient. But this family is handing out zebra cakes to bring awareness that sometimes it is a rare disease that has you ill.

It's a fun way for young Thomas to celebrate that he's different. While letting others, who are ill, and don't know why, to keep fighting for answers.

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