Etched in my memory
• June 2, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, challenge, eli and ella, Eliandellasprayerwarriors, Fear, future, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, Miracle, MLD, never give up, purpose, rare disease, sadness, sorrow, special needs, strength, trials, warriors
The priceless gift of gene therapy – Day 4 in Milan
• April 20, 2023 • 3 CommentsPosted in Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan
Tags: AGC biologics, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, gene therapy, gift, God, gratitude, happiness, healing, Hero, hope, Italy, journey, joy, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, purpose, rare disease, rgrowth, special needs, strength, thankful, warriors
A good day – Day 3 in Milan
• April 18, 2023 • 4 CommentsPosted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: appreciation, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, family, friends, gene therapy, gift, God, gratitude, growth, happiness, healing, Hero, hope, hospital life, journey, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, miracles, MLD, Mother Nature, never give up, past, purpose, rare disease, special needs, spring-ford, strength, struggle, thankful, warriors
For a moment, not much else seemed to matter – Day 2 in Milan
• April 17, 2023 • 4 CommentsPosted in Along the way, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, luckiest of the unlucky, memories, metachromatic leukodystrophy, Milan, miracles, MLD, never give up, rare disease, San Raffaele, sorrow, special needs, strength, warriors
Back to where it all started – Day one
• April 16, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, back where it all started, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, finding the good, gene therapy, God, journey, joy, life, listening, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, PTSD, sorrow, special needs, strength, tears, warriors
Drowning in my sleep
• April 5, 2023 • 1 CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, believe, challenge, changes, day by day, drowning, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, God is my lifeguard, gratitude, Hero, hope, journey, joy, learning, life, lifeguard, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, sadness, scared Jesus, sobriety, sorrow, special needs, strength, trust, warriors, water
Eli’s sidekick, Ella Rose
• March 28, 2023 • Leave a CommentPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, ella, Ella Rose, Enjoythemoment, fierce, friends, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rainbow loom, Rams, special, special needs, strength, warriors
So much bigger than the game -A feel good story
• March 22, 2023 • 5 CommentsPosted in Along the way, Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, changes, coaches, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, feel good, gene therapy, God, gratitude, Hero, hope, inclusion, inspiring, inspirstional, journey, joy, learning, Love, memories, metachromatic leukodystrophy, MLD, more than basketball, my four warriors, never give up, Rams, special needs, spring ford rams, spring-ford, strength, warriors
Giving it all in the moment we are in
• March 11, 2023 • 3 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, day by day, don’t stop, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, enjoy the moment, Enjoythemoment, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, live, live in the moment, live like Eli, Love, metachromatic leukodystrophy, MLD, never give up, Rocky, special needs, strength, warriors
Getting ready for the big game, CHOP STYLE 😍
• March 1, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, basketball, district, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, gene therapy, God, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, Rams, sorrow, special needs, spring-ford, strength, warriors
Fear Not 