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German cyclist stops in KC on cross-country trek to raise money for kids with rare diseases

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KANSAS CITY, Mo. -- A German cyclist is on a cross-country trek to raise money and awareness for children who have rare diseases.

On Friday, he stopped at Children's Mercy Hospital to meet some patients and talk about his drive to make a difference.

“About a week ago, we received an email saying there`s a cyclist coming through the area. He`s cycling for rare diseases, and let's put something together at the hospital and make his stay welcoming,” metro mom Dawn Graczyk said.

Graczyk is hosting Jörg Richter, from Germany, as he cycles across America for children with rare diseases -- a cause near and dear to her heart.

“I have six children. Two have a rare disease called Friedrich's Ataxia. And we`re constantly busy, and there`s not always real things I can do,” Graczyk said.

Richter is cycling for the organization, Care For Rare, going from San Francisco to New York with 13 hospital visits in between.

“I said, 'I`m going to combine my passion of cycling and the idea of doing something special for kids to raise awareness,'" Richter said, “Four years ago, three good friends of mine died, and I had a look at my own bucket list.”

He said he wanted to do it for a good cause, and children seemed to be the right fit.

Jörg Richter visits with patients at Children's Mercy Hospital on Friday, July 27, 2018.

“It's the main motivation because I think the goods -- they show us something about the worth of life. The kids in the hospitals, especially kids with rare diseases, there are a lot of them who know they won`t leave the hospital or won`t live life for much longer. Still they enjoy that special day when I show up,” Richter said.

And Graczyk said his mission created an immediate connection.

“Our research organization is called the Friedrich`s Ataxia Research Alliance, and they have a group called Ride Ataxia that bicycles to raise money for treatments and cures for Friedrich`s Ataxia. So Jörg, when he arrived, said, 'I don`t believe in coincidences,' and I said neither do I. We have a friend who cycles for our rare disease,” Graczyk said.

Graczyk knows about long hours, weeks, even months in the hospital.

“The hardest part for my family, having children with rare disease, is you feel isolated,” Graczyk said. “So when we see somebody like Jörg cycling for Care For Rare, then there`s this moment where you realize that there are people who know we`re here. There`s people who care, and that there's hope. If we can work together, I think we have a great chance of just making life better for our kids.”

“Don't postpone your dreams. Live your visions. Be thankful that you`re able to get up in the morning by yourself without the help of a nurse,” Richter said.

Richter started in Stanford, California, in April, and will finish in New York in September.

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