02/28/2026
I care about someone rare! 💜🦓
Drop a photo in the comments of your warrior!
Today is Rare Disease Day 🦓💜
And my girl?
She is the rarest kind of miracle.
Paisley has UBA5 and Lennox-Gastaut Syndrome (LGS).
UBA5 is considered ultra-rare.
There are fewer than 100–200 documented cases worldwide. Worldwide.
That means far less than 1 in a million children are diagnosed.
Let that sink in.
Then add Lennox-Gastaut Syndrome. A severe, drug-resistant form of epilepsy that affects roughly 1–2 in 100,000 children.
Statistically speaking… the odds of having both are staggering.
And yet here she is.
Psalm 139:14 says, “I praise You, for I am fearfully and wonderfully made.”
Not accidentally made.
Not mistakenly made.
Wonderfully made.
Even with a genetic mutation.
Even with seizures.
Even with medications and surgical conversations.
She is not a mistake in the data.
She is intentional in His design.
Rare doesn’t mean broken.
Rare means set apart.
She is my little unicorn, walking proof that even the rarest diagnoses are still under the sovereignty of a very big God.
So today we raise awareness.
For research.
For funding.
For families navigating words they never expected to learn.
But mostly?
We celebrate her.
Fearfully.
Wonderfully.
Uniquely.
Made.
