Monte Cassino Raises Money To Help Students With Rare Disorder

Tuesday, May 6th 2014, 7:26 pm
By: News On 6

Kids at Monte Cassino School are raising awareness and money to find a cure for neurofibromatosis, commonly called N.F. It's a genetic disorder that causes tumors to grow. The genetic disease affects 1-in-3,000 people, but three Monte Cassino families have been affected.

Collecting quarters, pennies nickels and dimes-was quite exciting. Dumping the coins from bags to boxes into MidFirst's coin counter proved funny for most of the Monte Cassino kids, but Sarah Tucker hopes the change will add up to a cure for her daughter Leah.

Their life changed after mom noticed the spots on Leah's skin.

"It looks like a light coffee colored birthmark, and you know, a lot of people have them," Tucker said. "One or two on the body is not a cause for concern, but she had three or four."

She still has them, and she calls them angel kisses. At three years old, Leah was diagnosed with neurofibromatosis.

"She's got legions in her brainstem and optic nerve tumor and a tumor on her ankle. Those have been stable since she was three, but you worry these tumors may grow," Tucker said.

She channels that worry into work by fighting for a cure. N.F. can cause blindness, bone abnormalities, cancer, and deafness.

"Every time she falls down I'm wondering, ‘oh my god does she have another brain tumor,'" Tucker said.

Leah is one of three kids at Monte Cassino School with N.F.

MidFirst Bank is matching $750 of the money raised Tuesday. They are walking to raise more, so Leah doesn't have to worry about tumor ankles anymore.

This year's walk is May 17th at LaFortune Park, and it is dedicated in memory of Scarlett, a classmate who died in January from complications of N.F., you can help here.