Light a Candle for Joseph
Anaphylaxis is not fair. The reality of anaphylaxis is such a huge burden with every bite (or other allergic triggers). I already thought we had hit our food allergy breaking point months ago, when I had shared about three food allergy related deaths that took place in one month and some unkind comments by a school board member. Even though there have been a handful of other sad stories of food allergy related tragedies in the last few months, anaphylaxis and the food allergy epidemic shook me to the core again this morning. Within a span of 5 minutes, I was reminded that a little boy will be celebrating his birthday in heaven and I learned that two more lives were lost.
Julianne, Joseph DiNicola’s mom, reached out to me and made a special request “Joseph’s Birthday will be on March 18th. On this day I would love for all of you to light a candle, in honor to him being now his first as an Angel. This would give me comfort to my heart.” Julianne shared about Joseph’s life on her Facebook page and tears welled up again. I have a few friends who have lost their precious children to food allergies and in the midst of their grief, they share important and life-saving reminders as they advocate to save lives. Please pay attention to Julianne’s most important take home message to keep prescribe epinephrine close by and use it right away.
Our Angel Joseph our Milkyway guardian will always protect all of you, see it was not the EPI pen that did not work it was time, and the time it takes we do not have time to think just do. So JUST DO IT, NEVER WASTE TIME and ALWAYS have EPI on you , just as you put shoes on your feet each day.
Please honor Joseph’s memory by lighting a candle or saying a prayer of comfort on his birthday. Pray for a cure, pray for our loved ones to be safe, pray for our communities to be more understanding.
I went on to scan headlines and saw that my friends had shared the story of Scott Johnson, a 16 year old teen who went out to eat with his family, was assured that his pancakes didn’t contain milk and would be prepared safely. But after he ate, he started to have a reaction and asked to go home because he had forgotten his EpiPen.
Then the next headline was about Rebecca Vassie, a British photojournalist on assignment in Uganda, who had accidentally eaten foods with nuts and passed away from a severe allergic reaction.
I am sincerely sorry for Scott and Rebecca’s families and friends and wish to express my condolences. I wish there were a way to prevent the allergic condition. a way to reverse this condition, a cure, a way to spare the lives lost. I am so sorry and mere words are inadequate to express my sympathy.
As a food allergy mom, the thought that allergies to food, medicine, insect stings, latex, or anything else that our bodies decide to become allergic to makes me want to cry. I usually avoid reading comments to accompanying articles as there is so much skepticism and finger pointing about the details. Some of the comments lack awareness and compassion even though people died due a medical condition and a series of circumstances beyond their control.
But I am also strengthen in courage to love and resolve to advocate by a very timely reminder from my friend Jennie, who participated in (understatement, she actually rocked) a triathlon to honor the unexpected passing (not anaphylaxis related) of her dear friend Paula, “What I do fear is not having lived or loved to my best and fullest before God calls me Home. As I sit here alone in my comfy chair the day after my triathlon, I find my thoughts on my beloved friend Paula. She lived and loved and made sure everyone knew just how much they meant to her. While her sudden departure was and still is heartbreaking, her legacy lives on….Let this be an invitation to you to join me in living life and loving all the people and experiences we have the honor of affecting, even if for a moment.”
Anaphylaxis related deaths are very tragic but we can honor the lives lost by living our lives fully, loving others, and making a difference. Let’s resolve to check our anaphylaxis safety nets (related reading: keep your epi with you, review how to use it, read food labels, make sure kids at school are safe) and then live this precious life with love and courage. Robyn O’Brien is one of the most courageous, intelligent, and vocal advocates I know, yet her constant refrain is love and courage, so I’ll share one of her quotes which resonates with my heart.