Archive for the 'Life after diagnosis' Category
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
So much bigger than the game -A feel good story
• March 22, 2023 • 5 CommentsPosted in Along the way, Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, changes, coaches, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, feel good, gene therapy, God, gratitude, Hero, hope, inclusion, inspiring, inspirstional, journey, joy, learning, Love, memories, metachromatic leukodystrophy, MLD, more than basketball, my four warriors, never give up, Rams, special needs, spring ford rams, spring-ford, strength, warriors
Giving it all in the moment we are in
• March 11, 2023 • 3 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, day by day, don’t stop, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, enjoy the moment, Enjoythemoment, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, live, live in the moment, live like Eli, Love, metachromatic leukodystrophy, MLD, never give up, Rocky, 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
Inclusion at its finest
• January 9, 2023 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living
Tags: acceptance, changes, community, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, God, gratitude, hope, inclusion, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, sfasd, special needs, spring-ford, spring-ford proud, strength, warriors
Violated and vulnerable
• October 31, 2022 • 3 CommentsPosted in Along the way, Diagnosed, Life after diagnosis
Tags: acceptance, choices, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Facebook, Fear, God, hacked, hope, journey, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, sorrow, special needs, strength, struggle, violated, warriors
Navigating the rollercoaster of life
• October 19, 2022 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: caregiver, Covid, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, exhausted, God, journey, joy, life, metachromatic leukodystrophy, MLD, never give up, peaks and valleys, roller coaster, special needs, strength, ups and downs, warriors
Fear Not 