The journey of many miles, tears and smiles – Thank you Milan
• April 28, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, challenge, clinical trial, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, goodbye Italy, grateful, gratitude, Hero, hope, hospital, Italy, journey, joy, life, Love, memories, metachromatic leukodystrophy, Milan, Milano due, miracles, MLD, never give up, normalcy, rare disease, sadness, sorrow, special needs, strength, thankful, warriors
Pushing through- Our last day of testing in Milan
• April 27, 2023 • Leave a CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, gene therapy, God, gratitude, happiness, Hero, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, rare disease, San Raffaele Ospedale, sorrow, special needs, strength, thankful, warriors
When strangers become friends- 8 years ago in Milan
• April 27, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, friends, gene therapy, God, gratitude, gray itude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, rare disease, sadness, sorrow, special needs, strangers, strength, thankful, warriors
Easy peasy – Day 6 in Milan
• April 21, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, My journey
Tags: acceptance, changes, China town, clinical trial, day by day, dinner, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, gene therapy, God, gratitude, hospital, journey, joy, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, pizza, positano, sorrow, special needs, strength, vacation, warriors, window shopping
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
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
Fear Not 