Archive for the 'Back to life and living' Category
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
No matter how many times we do it, it never gets easier – Day 5 in Milan
• April 20, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan
Tags: anxiety, challenge, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, grateful, gratitude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, MRI, never give up, purpose, rare disease, sorrow, special needs, strength, 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
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
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
When love hurts
• August 2, 2021 • 1 CommentPosted in Along the way, Back to life and living, Day by day 2021, Diagnosed
Tags: choices, Eliandellasprayerwarriors, Fear, God, hurt, journey, life, Love, mental health, MLD, one day at a time, pain, sorrow, special needs parent, strength, trust
The gift of conformity
• December 27, 2019 • 7 CommentsPosted in Back to life and living, Life after diagnosis, Milan
Tags: acceptance, conformity, Eliandellasprayerwarriors, Fear, journey, life, memories, metachromatic leukodystrophy, Milan, MLD, strength
The sacrifice of Thanks
• March 8, 2016 • Leave a CommentPosted in Back to life and living
Tags: God, gratitude, metachromatic leukodystrophy, MLD, thankful
Finding purpose in pain
• April 7, 2015 • 4 CommentsPosted in Back to life and living, Diagnosis, Life after diagnosis
Tags: eli and ella, journey, joy, metachromatic leukodystrophy, MLD, purpose, sorrow
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 