29Jul
Preparing for a Planned Hospital Stay
Tips to ease stress and help you prepare before, during, and after your child's hospital stay.
1. Skill or expertise in a particular activity or field
2. Bravery in battle
Rare Diseases
0
+
million people worldwide with a rare disease
100
million U.S. children with a rare disease
1
of patients diagnosed with a rare disease are children
1
%
08May
Mother’s Day: A Few Thoughts On Bonding & Being There
Nikki shares a few thoughts on the deep bonds we form with our children through trust, support, and by simply being there.
12Feb
Rare Disease Day 2024
Check out all the great content to shine a light on rare diseases for Rare Disease Day 2024.
16Jan
Charting the Unknown: Navigating the New Year Amid Uncertainty
Nikki shares practical tips and approaches for navigating a new year amid uncertainties of a rare disease.
About Me
Hi, I’m Nikki,
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!