About Addi

Addi lived a Big Beautiful Life with unparalleled passion and purpose. She was community oriented and is a beloved member of the Essex Fire Department Family. Her call sign is 15A1. She tracked all calls and was happiest when she was near “my firefighters” or heard that they were safe back in quarters. Essex Fire also named a Fire Truck after her. Like Addi, Addi’s Engine (Engine 2) is all wheel drive and takes anything life has to throw at it. Addi’s Engine symbolizes courage, devotion and resilience and reminds people to take care of each other. It will keep our community and Addi’s fire brothers & sisters safe for years to come.
 

Addi repeatedly defied the medical odds, drew everyone she met to her and helped them believe in possibilities. She had an extraordinarily large, brilliant team of doctors and scientists led by two who fiercely pursued miracles for Addi. Nearly all of her medical care happened out of state. Despite all of the hard things she endured there, she truly enjoyed spending time with her people at Boston Children's Hospital (where she was admitted her last six months and spent nearly one quarter of the days of her short life). Her last 3 years, she traveled there by small plane (with her constant companion Chief Charlie the Mouse) thanks to Angel Flight Northeast. She was an adventurous passenger, throwing her arms in the air for take offs and landings and the “bumpies” in flight were always met with an infectious giggle.
 

Addi also enjoyed being part of her school community. She was silly, social and excited when she was with her friends. She was deaf-blind, cognitively impaired and had countless severe and complex medical and developmental issues, but these challenges never prevented her from being loved by her peers and having 2 best friends. She was educated from her home or the hospital frequently - including the last 2 years of her life. She participated in school using a robot called the Addi-bot. When she logged in, the lights would come on and all of the kids would come rushing to greet her…and the teachers would often call out to tell her to “stop running in the halls.”
 

At home, she enjoyed playing with our family and pets, Chief Charlie the mouse and her friends.   Her favorite things to do (no matter where she was or her condition) were to look at pictures and videos on her ipad (particularly those of her fire family), drive her home fire truck, swim, dance, swing and play with dolls, squish-ies or her ice cream truck & ambulance. She NEVER complained and always found joy, even when she became fully paralyzed. 

She had an Indomitable Spirit and Relentlessly lived a Big Beautiful Life filled with joy. She never seemed to understand that her life was hard. Making family of every person she met (and many she never met), she brought people together and inspired everyone to believe in possibilities.   She lived more life in 12 short years than most people who live a full life.  Now that her medical battle is done and she is free of pain, we hope she leaves everyone her life has touched inspired to be present in life, believe in possibilities, find joy, be an engaged member of their community and help others.

Big Beautiful Life brings us together to honor Addi.  Taken from the world too soon, she was a role model to all with her Indomitable spirit. Informed and shaped by our shared journey with Addi, we honor her legacy by continuing to share memories as well as spread her powerful messages and inspirational story. While achieving our mission, we will focus on:

• Things & people which brought her joy and helped her thrive
• Facilitating joy for children in medical crisis & their families
• Bringing awareness, resources and advocacy to those who helped Addi thrive so they may help others may do the same
• Supporting those who embody her passion and purpose for helping others, finding joy and overcoming significant barriers with an indomitable spirit
• Helping others navigate the cruel issues she and her loved ones faced so they too can live a big beautiful life
• Raising awareness regarding medical complexity, rare & novel disease and navigation of health issues & care systems...and, of course, volunteer fire service