As she kicked off her shoes and curled up in the large cushioned chair in the hotel lobby, Democrat Senator Debbie Smith asked me tell her everything about life-threatening food allergies. The rather drab, quiet and uneventful looking lobby was suddenly flooded with her warmth and down-to-earth nature. With her hand tucked under her chin, she gave me her full attention. I nervously spat out current facts and statistics with hopes of laying the ground work of why we needed this conversation. This was the first time I had ever met with a legislator one-on-one to ask them to create new law.
Months earlier, I had attended a Patient Speaker’s Workshop where I learned one life-changing lesson. Share your story or how another’s story impacted you. Change needs real people, with real stories to help decision makers understand their community’s needs.
The school food allergy death of Ammaria Johnson shook me to my core. Everyone had followed district protocol, but yet she died from an allergic reaction after unknowingly eating candy containing her allergen on the school yard. The ambulance arrived quickly, but it was too late. I feared this would happen in Nevada if we didn’t create fast and easy access to epinephrine.
Senator Smith explained that she was worried too. Her own grandchild had developed a life-threatening nut allergy and she understood. At that moment, I realized there was no need to be nervous. I was speaking to a grandmother, former school teacher and PTA mom, who happened to be one of the strongest lawmaker in Nevada. Friends warned me to not get spoiled as Senator Smith is a shining example of what all legislators should be. She spoke in lay understandable terms with a passion for education and children. I quickly learned that good law is created when the people effected speak and interact with lawmakers.
I detailed Ammaria’s death and how her home state responded as I outlined existing laws in the few states, at that time, which allowed stock epinephrine. Unfortunately, most of those states had already experienced tragedy. Senator Smith wanted to be proactive, not reactive and sent me off with homework. I felt gratitude for this person who was ready to roll up her sleeves to see how we could protect our students with diagnosed and undiagnosed life-threatening allergies.
Her commitment shined as she pulled together a work group of stakeholders, her point to was find the best way to create a good law that would work for all parties involved. She was fierce and her passion was palpable. I suggested a voluntary law, she said, “no, we go all the way-a mandate”. Senator Smith didn’t want anything less for our community.
After a brief illness battling a brain tumor, Senator Smith tragically passed away on February 21st, 2016. We were all devastated. For personal reasons, as our families became friends and professionally, we were simply heart broken. The Senator and my daughter both wore matching Trust Your Journey Share Bracelets, Senator Smith said she enjoyed her reminder of why she does this kind of work―the children. She moved mountains as she worked closely and well with Republicans when the end goal was good for our state. Senator Harry Reid stated that Senator Smith, “was the epitome of an ideal neighbor, friend and public servant”. She was admired by many. Our Republican Governor, Brian Sandoval, explained that she was a “public servant whose record of accomplishments and presence in the Nevada Legislature will remain unmatched in the years ahead”. There was not a dry eye in the overflowing high school auditorium during her memorial. It was evident, Senator Smith changed our lives for the better.
Senator Smith understood our needs. She attended the opening night of the first annual Food Allergy Blogger Conference. As she spoke, her adult son was beaming. I leaned over and said, “You’re proud of your mom aren’t you?” He grinned ear-to-ear and nodded yes. After the conference, Senator Smith shared with me that she needed to hang out more often with our community since we were go-getters and so positive. As she battled her tumor, our community would send her tweets and messages of encouragement and prayers. She would happily text me to say, “That food allergy community has been busy today!” When she lost her hair, she donned a purple wig and was the literally, the brightest legislator on the Senate floor. Her positive attitude was infectious.
Post school stock epinephrine passage, Senator Smith did not stop. I joined her at the National Conference of State Legislators as we presented, “Protecting People with Life-Threatening Allergies”. I was able to explain to lawmakers that our food allergy community is a unique blend of parents and professionals, (such as lawyers, teachers, journalists, etc.), and I urged them to reach out to us as the experts who live daily with this disease. Senator Smith discussed how lives were saved in Nevada and made herself available as a resource to other lawmakers nationwide.
During her illness she worked as much as possible as others committed to continue her work to protect and support our allergic community. This held true when the Epinephrine Entity bill passed. As our State heads into the next Legislative session, I’m convinced there will be a quiet sadness hovering the building.
Senator Debbie Smith always kept her eye on the prize and in this current headline driven environment, I hope legislators will not lose sight and continue her legacy of protecting people with life-threatening allergies.
Continue the food allergy conversation on my blogsite Gratefulfoodie or @gratefulfoodie