Blog Archives
Changing the world one clinical trial at a time
• May 1, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, Hero, hope, hospital, Italy, journey, joy, learning, life, life changing, Love, memories, metachromatic leukodystrophy, Milan, Miracle, MLD, never give up, normalcy, rare disease, research, special needs, strength, treatment, 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
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
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
Will God heal me?
• February 28, 2023 • 2 CommentsPosted in Diagnosed
Tags: acceptance, anxiety, can God still perform miracles, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, healing, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, Questions, sorrow, special needs, strength, warriors
Learning to give yourself grace
• January 18, 2023 • 1 CommentPosted in Along the way, Life after diagnosis, living
Tags: acceptance, anxiety, day by day, DIY, do it yourself, eli and ella, Eliandellasprayerwarriors, Fear, gene therapy, Grace, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, normalcy, Pinterest, Pinterest fail, rare disease, sorrow, special needs, strength, warriors
Is God good all of the time or only when we get what we pray for?
• May 5, 2021 • 1 CommentPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, anxiety, changes, depression, eli and ella, Eliandellasprayerwarriors, faith, Fear, God, is God good, journey, joy, life, Love, metachromatic leukodystrophy, MLD, prayer, sorrow, strength, surrender
Day by day in every way I’m getting better and better – Emile Coue – Jan 6-Jan 9th
• January 11, 2021 • Leave a CommentPosted in Day by day 2021, Diagnosed
Tags: anxiety, day by day, Eli and Ellas Prayer Warriors, Enjoythemoment, Fear, future, gene therapy, God, hope, journey, joy, keep going, learning, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, sadness, sobriety, sorrow, special needs, strength, warriors
Jan 5th – Signs?
• January 6, 2021 • 2 CommentsPosted in Day by day 2021, Diagnosed
Tags: acceptance, anxiety, anxiousness, changes, death, depression, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, family, Fear, God, journey, joy, life, Love, memories, mess, message, metachromatic leukodystrophy, MLD, signs, sobriety, sorrow, strength
Fear Not 