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Teen with Rare Disease Gets Special Trip to Balloon Fest

CBS58—The 6th annual Balloon Fest is underway in Waterford and this year there is a VIP guest enjoying the celebration.

The program Wishes and More provided a weekend at Balloon Fest for 17-year-old Hannah Manche, who suffers from a very rare disease.

“I'm always fascinated by what the world looks like and all the colors we have,” Hannah said.

That fascination comes in part because her illness once robbed her of her vision.

“I was actually blind for an entire year,” Hannah said.

Four years ago, when she was 12, Hannah was diagnosed with the autoimmune disease known as Stephen Johnson syndrome. It left her with burns and blisters all over the outside and inside of her body.

“I lost all my skin,” Hannah said. “I lost all my hair and my eyes were completely destroyed, and basically I started living a life of complete and utter agonizing pain.”

But she persevered, and now lives every moment to the fullest, tackling items on her bucket list.

“There was a time when we didn’t think she would live, so when she gets to mark something off, it’s like she got to live an experience,” said Kathy Manche, Hannah’s mother.

This weekend that not only means hot air balloons, but she also got to take a helicopter ride.

“Seeing the pain she’s been through, seeing the happiness, it fills my heart,” said Johnny Manche, Hannah’s dad.

Though she still faces daily pain and health problems that keep her out of school one or two months every year, Hannah says she’s filled with hope.

“When you become hopeless, that’s when it becomes an unbearable battle,” Hannah said.

And despite all she’s endured, Hannah wouldn’t want to be anyone else.

“It’s taught me how to see every bit of happiness in this world,” Hannah said. “I wouldn’t trade it for anything. I’m really glad it happened to me.”

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