Menomonie (WQOW)- "It's been kind of a roller coaster for us as far as when it's going to happen," says Charles Miller, Tyler's father.
15-year-old Tyler miller was diagnosed with a disease that only affects one in one million people when he was eight years old.
"The disease is Dyskeratosis Congenita. It's a rare genetic blood disease and it increases his chances of getting leukemia and several forms of cancer," explains Lacey Hillman, Tyler's relative and organizer of the benefit.
"Basically he's in bone marrow failure right now and that's why the bone marrow transplant is required," Charlie says. "They said he could need it next month or when he's 30. We don't know."
That transplant is costly. That's why his family organized a benefit for him.
"We were hoping to raise $15,000, so anything above and beyond that would be ecstatic," Hillman says.
The transplant has been in the works for several years, but all the conditions need to be right in order to perform it.
"We thought it was going to happen two years ago," Charlie remembers. "Part of you wants to get it over with and the other half doesn't want to, I don't want to see my son have to go through that."
Through all the waiting and the doctor's visits, his family has stood by him.
"It was really scary because of all the unknowns; what to expect, what Tyler's going to go through, what we need to do for supporting him," Hillman says.
And although the disease has been difficult on the family, they aren't giving up anytime soon.
"We haven't stopped living because of it," Charlie points out. "I want Tyler to have as normal a life as possible and I want him to have good solid memories."
"And I am," interrupts Tyler. "That's good. That's good to know," smiles Charlie. "Then we are doing our job."
Tyler's classmates at Menomonie Middle School have also been raising money for his upcoming treatment. Hillman says they raised more than $500 dollars, all of which will be put in a trust for Tyler.
