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Thursday, July 12, 2018


WAUSEON, Ohio (WTVG) - A ride in a fire truck, superheros, and a family meal downtown, all for two special boys: Seth and and Zach Fuller.

"It's called Spinocerebellar ataxia type 40. They are two of only five people in the world that have it and they're the only two adolescents that have ever been diagnosed," said their mother, Heather Sims.

Their mother says both boys also have Autism and Seth has Crohn's Disease, and Zach has a heart condition.

She says those additional diseases cause the rare genetic disease they share to progress more rapidly.

"Two years ago Zach could walk and run and play and now he's in a wheelchair...Zach is down to just a few months because his heart is involved," said Sims.

"I'm focusing on their bucket list and focusing on every day making memories with them, but at the same time I'm writing a eulogy for my son and planning a funeral," said Sims.

Zach had a Make-A-Wish trip in April.

"We went to Disneyland, ate at a seafood restaurant, and we walked on the beach," said Zach.

Now, it's Seth's turn.

"To see upstate New York and see Niagara Falls," said Seth.

On their way to Niagara Falls, the family made a pit stop in Wauseon to visit their aunt Callie.

"Zach and Seth both told me they wanted to see everybody one last time, so this will probably be the last time that they ever see them," said Sims.

Their aunt arranged to have firetrucks and superheroes surprise the boys Wednesday.

"They were very surprised. They don't show emotion very well, you know, Seth and Zach never really have. It's part of the conditions that they have," said their aunt, Callie Puehler.

"Every stop that they go to I want to make it as special as possible for them because this is Zach's last journey," said Puehler.

"These are memories that their little sister and their older sister when they're gone will have forever and memories I'll have forever, and that's all we can do," said Sims.