A Tribute to a Special FIRST Member
The ichthyosis community has gained a special angel. Evan Mayone passed away Dec. 29, 2022, at Boston Children's Hospital from chemotherapy complications due to leukemia.
Evan was one of the most uplifting and committed supporters of FIRST. And he made all this impact in 17 short years. He will be remembered for his joyous spirit, quick wit, unflagging compassion and tenacious will.
Evan was born with epidermolytic ichthyosis July 1, 2005. EI caused thick, scaly, sensitive areas to develop on his hands, feet and joints. But he never let it slow him down or diminish his spirit. As most in the ichthyosis community know, EI requires a lot of daily maintenance (baths and Aquaphor). It required constant monitoring of heat/humidity in a state with few air conditioners. When other kids walked, Evan would use a Razor scooter and occasionally, when the pain was really bad, he needed to use a wheelchair.
In 2020, and again in 2021, Evan won the FIRST Frances Bernstiel Junior award. This award goes to the young member under the age of 18 who was top fundraiser for the year. Evan is the only person ever to win it twice.
FIRST is proud to announce this award will now be named the Evan Mayone award--to honor his life, spirit, and commitment to others.
Summarizing a life so short--yet so full--is an impossible task. Instead, we will share some of the lessons we learned from this incredible young man.
What Evan Taught Us
Own your Ichthyosis Story
When anyone questioned the condition of his skin, directly or indirectly…rudely or politely, Evan would confidently hold his ground. Often, he would look them in the eye and say “I have dry skin,” and indicate it was time to move on.
Cancer patients, especially children, require a lot of blood products especially whole blood, platelets and plasma. In October and December 2022 Evan had some major setbacks that required emergency intervention and a transfusion/resuscitation using 10 units of blood, 10 units of blood is 1.5 gallons or 5.6 liters!
Credit: American Red Cross, Blood Services
Community is Everything
In a Facebook post, Evan’s mom Kimberly Mayone said “Just as we have been since Evan's birth, we will be buoyed by your kindness, love and support.”
Fundraising is a Family Hobby.
Evan worked with his mom and grandma to have annual fundraisers. He wanted to continue in his grandma’s memory, writing for his last fundraiser “Typically, I do this fundraiser in coordination with my grandmother, but due to her passing, I want to carry on her dreams and continue this wonderful tradition we had made.”
Be the Kind of Friend You Want to Have
Evan had a dedicated posse of friends, many of them girls, who shared his interest in fashion, social media, food and other trends. At his high school, Evan was a member of the yearbook staff and the equity steering committee, and he served as class president his freshman and sophomore years. In his final days, Evan’s family played him more than 100 audio messages from friends and loved ones.
Credit: Julie Amoroso
You’re never “too young” to make an impact!