I’m trying
• May 15, 2023 • 3 CommentsPosted in Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, day by day, depression, eli and ella, Eli and Ellas Prayer Warriors, family, Fear, fitting in, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, praying, rare disease, sadness, sorrow, special needs, strength, thankful, warriors
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
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
He was once like you
• February 16, 2023 • 2 CommentsPosted in Diagnosed
Tags: acceptance, changes, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, gene therapy, God, growth, happiness, hope, inclusion, journey, joy, Love, memories, metachromatic leukodystrophy, MLD, moving mountains, never give up, normalcy, past, special needs, sports, strength, thankful, warriors
A gift
• November 4, 2022 • 1 CommentPosted in Diagnosed
Tags: acceptance, Birthday, caregiver, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, gene therapy, gift, God, gratitude, hope, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sadness, special needs, strength, thankful, 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
The sacrifice of Thanks
• March 8, 2016 • Leave a CommentPosted in Back to life and living
Tags: God, gratitude, metachromatic leukodystrophy, MLD, thankful
Fear Not 