Students raise money for teen with rare disease

1 post · started Sep 29, 2009

cougarnurse Sep 29, 2009, 1:48 AM
This is an awesome story! Nursing Students Raise Money For Teenager With Rare Disease - News Story - WJAC Johnstown

A group of nursing students are making a difference by helping a Johnstown girl battle a rare disease.

Lafora disease is a rare form of epilepsy. Only 200 kids worldwide are diagnosed with the disease, with only 10 known cases in the United States.

Jessica Ambroe was diagnosed with Lafora in February. Jessica, 15, used to be a cheerleader at Ferndale High School. Earlier this year, she experienced a number of seizures.

Lafora disease occurs when the brain loses an enzyme, causing nerve damage.

Jessica's condition has deteriorated in just months. She is now home schooled, and has difficulty walking and talking.

After hearing Jessica's story, Jamie Eckenrod, a senior at the Conemaugh School of Nursing, decided to get involved. She rallied her fellow nursing students to raise money for Lafora research.

They held a bake sale during this summer's Thunder in the Valley that raised $1,500.

Eckenrod and the other nursing students presented Michele Ambroe, Jessica's mother, with a check for $1,500.

Eckenrod was inspired after hearing Jessica's story. "Michele's daughter was in her teens before anything happened to her, and I just thought that can happen to any one of us. Being in a nursing school, I think it is really important that we raise awareness and band together."

Michele Ambroe expressed her gratitude for all the support that the nursing students have provided. "It's an orphan disease, there are no federal funds to research a cure, and we just can't sit there idle and let our kids die."