Live Like Eli
• March 24, 2024 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, changes, day by day, disability, eli and ella, faith, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, live, live like Eli, Love, memories, metachromatic leukodystrophy, MLD, never give up, present moment, rare disease, sorrow, special needs, strength, surgery, warriors
“Let there be no darkness in your heart“
• November 21, 2023 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, sobriety, the ride of my life
Tags: acceptance, challenge, changes, death, depression, divorce, dying, family, fathers, Fear, God, gratitude, growth, happiness, healing, hope, journey, joy, learning, lessons, life, live, Love, memories, monsters, never give up, normalcy, parental loss, sadness, sobriety, sorrow, strength, struggle, thankful
Today is international pickle day!
• November 14, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, games, gene therapy, gratitude, growth, healing, Hero, hope, international pickle day, learning, live, Love, Miracle, MLD, never give up, normalcy, one day at a time, rare disease, special needs, thankful, warriors
Using anxiety as a catalyst for growth
• November 8, 2023 • Leave a CommentPosted in living, My journey, sobriety, the ride of my life
Tags: anxiety, anxious, challenge, change, day by day, drew Barrymore, eli and ella, gratitude, growth, learning, letting go, live, never give up, one day at a time, sorrow, strength, struggle
We are not different, we are unique
• June 22, 2023 • 2 CommentsPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, angel, angels, changes, clinical trial, day by day, eli and ella, Enjoythemoment, family, friends, gene therapy, God, gratitude, happiness, healing, Hero, hope, journey, joy, learning, lessons, live, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, normalcy, purpose, rare disease, special needs, spiritual, strength, teaching, thankful, unique, 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
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
Philly for the day and another lesson in never giving up – Jan 10
• January 11, 2021 • Leave a CommentPosted in Day by day 2021, Diagnosed
Tags: 2021, art museum, change, eli vivian, eliandella, gift, gratitude, growth, happiness, lessons, leukodystrophy, live, lucky, metachratoc leukodystrophy, Miracle, my4es, never give up, pats steaks, Philadelphia, Rocky Balboa, struggle, thankful, trials
Living, learning and loving
• February 22, 2015 • Leave a CommentPosted in Back to life and living
Tags: gene therapy, journey, learn, live, Love, metachromatic leukodystrophy, MLD, people, trials
Fear Not 