Archive for the 'Diagnosis' Category
How to “find” gratitude even when you don’t feel it
• September 24, 2023 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, blog, day by day, drew Barrymore, eli and ella, Eli and Ellas Prayer Warriors, finding gratitude, finding joy, GMA, God, good morning America, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, positive, positivity, rare disease, special needs, strength, today show, warriors, writing
When trusting your gut leads you to the unthinkable
• September 19, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, the ride of my life
Tags: CHOP, clinical trial, day by day, drew Barrymore, DuPont, eli and ella, Eli and Ellas Prayer Warriors, every day heroes, Fear, finding answers, gene therapy, God, hope, journey, life, Love, metachromatic leukodystrophy, MLD, neurologist, never give up, rare disease, special needs, strength, terminal illness, the today show, trusting your intuition, 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
When you can’t look away
• December 1, 2020 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living
Tags: acceptance, challenge, changes, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, gift, journey, joy, life, Love, lucky, memories, metachromatic leukodystrophy, MLD, sorrow, strength, warriors
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
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
Fear Not 