ST. CLAIRSVILLE - Frankie Favede of St. Clairsville is a 4.0 GPA student and a three-sport athlete, but lives in fear every day of being exposed to something that could put his life in jeopardy.
Favede, son of Ginny and Lee Favede, was first diagnosed with severe nut allergies at 18 months old when he began to swell up and breaking out in purple hives on his arms and onto the rest of his body as if in a "sci-fi movie." He had gone into anaphylactic shock after being exposed to nuts.
Favede, now in eighth grade at St. Clairsville Middle School, could go into anaphylactic shock if exposed to the dust or oils of tree and ground nuts, including peanut butter.
Photo by Sarah Harmon
St. Clairsville Middle School student Frankie Favede holds his epi-pens that he can inject into himself if he ever goes into anaphylatic shock from his severe nut allergy. Favede hopes Ohio will pass legislation requiring all schools to stock undesignated EpiPens.
Anaphylaxis is a systematic allergic action that can kill a person in minutes from asphyxiation or extremely low blood pressure.
Favede is at risk of of going into anaphylactic shock even if he just touches leftover dust on a surface that had nuts on it.
"The biggest thing is living in fear," Favede said. "I'm worried some day I'll be eating with a group of people and I'll forget (I'm allergic) and someone will offer me peanut butter and I'll say, 'yes.' You get worried a lot."
Every time Favede orders food from restaurants and vendors, he has to ask what kind of oil in which the food is fried since he cannot consume peanut oil and has to avoid some restaurants all together.
Even if a restaurant uses another kind of oil, if they fry something with nuts on it, the oil can become contaminated.
Some brands are completely banned from the Favede household because some companies will process foods with the same equipment used to process nuts. Favede cannot consume anything without checking the label first.
"It's a very frightening world to live in," Ginny Favede said. "You spend every single day preparing for the worst case scenario when you are so allergic. Everything you eat, you have to check the label. We don't deviate from brands. It's a way of life and it's something we have to practice."
Favede said his entire day revolves around his epinephrine auto-injector, or EpiPen, which he carries on himself at all times. If injected promptly, epinephrine can save an allergic person going into anaphylactic shock. Favede is never without one and his parents both carry one as well.
Now Favede wants to pass legislation in Ohio that will require schools to stock undesignated EpiPens at all times in case a student has an allergic reaction, especially an expected one. He said 17 students in St. Clairsville schools alone have some sort of nut allergy.
According to Food Allergy Research Education, 12 states already require schools to stock EpiPens in the nurse's office. This is especially important since, according to FARE, studies show about a quarter of first-time allergic reactions occur in a school setting.
Until 2007, Ohio law said children were not allowed to have EpiPens or inhalers on them at school and instead had to keep them locked away in a nurses' station.
Favede was inspired to advocate for EpiPens after attending the National Young Leaders State Conference last month in Columbus, Ohio.
The four-day program brings together students in seventh and eighth grades from around the state and teaches them the skills to become leaders in causes in which they believe.
After attending the conference, Favede received an email from FARE, which advocates introducing legislation in every state to allow schools to stock EpiPens, encouraging him to support the cause.
"Frankie looked at me and said, 'This is something I can do,'" Ginny Favede said. "It's perfect for him. When he wanted to get involved in this, I was very proud of him. I think, as a mom, it would give mothers a peace of mind if something happened beyond what we have prepared that there's a safety net there."
Ginny Favede said the Ohio Association of School Nurses also wants state lawmakers to make stocked EpiPens a requirement in school.
"These are the people who have to deal with these kids and as a parent, I would feel terrible for a nurse who has to stand by and not be able to take care of a child because they are not equipped with possession of an EpiPen," she said.
Favede hopes to work with Sen. Lou Gentile, D-Ohio, whom he met at the leadership conference, to advocate passing legislation for EpiPens in schools. He has begun writing letters to Sen. Rob Portman R-Ohio; Sen. Bill Johnson, R-Ohio; and Sen. Sherrod Brown, D-Ohio, asking for their support in his mission. If it becomes an issue at the state level, Favede hopes to provide testimony of his experiences with a severe nut allergy.
"I want to make a big difference in the community if not worldwide," Favede said. "It just came to me that somebody's going to make a difference and I was the one who wanted to make a difference."