Teenager with rare disease fights to finish high school - wave3.com-Louisville News, Weather & Sports

Teenager with rare disease fights to finish high school

Michael Moore (Source: WAVE 3 News) Michael Moore (Source: WAVE 3 News)
Jack and Michael Moore (Source: WAVE 3 News) Jack and Michael Moore (Source: WAVE 3 News)

LOUISVILLE, KY (WAVE) – A student with a rare nerve disease is fighting to graduate from high school.

Michael Moore found out he had Neurofibromitosis, or F1, when he was a sophomore at Trinity High School.

"He's a tumor making factory,” his father, Jack Moore, said.

Michael Moore has benign tumors that attack his nervous system all over his body.

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"There's sharp pain," Michael Moore said.

Even with the disease and trips to Ohio for testing, he kept studying.

"He was on a morphine and Dilaudid pump at Kosair,” Jack Moore said. “He still had a 3.25 (grade point average.)"

"I just want to finish school,” Michael Moore said.

He and his family are fighting to make that happen quickly. A tumor has made Moore blind in his left eye, and he may lose sight in his right eye as well.

"It's not like death is there, but it's creeping," Jack Moore said.

Rising medical costs made Moore leave Trinity. His father used to earn more than $2,000 a week working on computers, but now battles epilepsy.  His mother also has F1, so the family of four lives off about $2,400 a month.

Michael would go attend a public school, but the family worries about their son being robbed for his pain medication or having a medical emergency.

“I said ‘listen, rare disease, what can we do,’” Jack Moore said.

Michael was in a home hospital program at JCPS before the district shifted him to its E-School program.

"Biggest joke I've ever seen," Jack Moore said. "It’s the most ungodly amount of paperwork. It'd take you 10 years to get out of high school."

When the family wanted to switch Michael out of the E-School program, the district wanted to retest Michael, which the family said would ignore the hard-earned freshman year at Trinity.

Now, the family is pushing for verbal testing, but said the district has been against it.

A school district spokesperson said the district cannot discuss individual students and did not say whether verbal testing was an option.

"I want to finish school," Michael Moore said.

“He wants his education and he deserves it," his father said. 

The district said it does have programs to help students with specific needs and is willing to work with families.

Now, the Make-A-Wish Foundation is in the process of sending Michael and his family to Universal Studios in Orlando.

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