Blog Archives
The desperate search for joy in pain
• January 16, 2019 • 7 CommentsPosted in Diagnosed
Tags: acceptance, eli vivian, Eliandellasprayerwarriors, Ella vivian, Fear, gene therapy, God, journey, metachromatic leukodystrophy, MLD, normalcy, sorrow
Rare Disease Day
• February 28, 2017 • 2 CommentsPosted in Diagnosed, Diagnosis, Life after diagnosis, Milan
Tags: clinical trial, life, metachromatic leukodystrophy, Milan, MLD, rare disease day
When you don’t (want to)see what’s right in front of your face
• October 7, 2016 • 2 CommentsPosted in Diagnosed, Life after diagnosis
Tags: Eli and Ellas Prayer Warriors, gene therapy, metachromatic leukodystrophy, MLD
The sacrifice of Thanks
• March 8, 2016 • Leave a CommentPosted in Back to life and living
Tags: God, gratitude, metachromatic leukodystrophy, MLD, thankful
Happiness may not always be a choice but laughter and love can be
• December 29, 2015 • Leave a CommentPosted in Diagnosed
Tags: Eli and Ellas Prayer Warriors, happiness, laughter, Love, metachromatic leukodystrophy, MLD
Life as I know it three years later
• September 19, 2015 • 6 CommentsPosted in Life after diagnosis
Tags: diagnosis, eli and ella, lessons, life changes, metachromatic leukodystrophy, MLD, warriors
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
Please
• February 9, 2015 • 3 CommentsPosted in Back to life and living, Life after diagnosis
Tags: Eliandellasprayerwarriors, journey, joy, life, metachromatic leukodystrophy, MLD, sorrow
Everyday life – post transplant.
• October 20, 2014 • 1 CommentPosted in Along the way, Back to life and living
Tags: appreciation, eliandella, metachromatic leukodystrophy, MLD, normalcy
Fear Not 