Rare Gene Day

The last day of February, which today also happens to be Leap Year, has traditionally been Rare Gene Day. It's always on the last day of February that they ask people to wear jeans for genes. You can also go on their website and make a pic like I did here. The text is what I posted on Facebook with the pic.

Today is rare disease day. My son is rare indeed.
Muenke is 1 in 30,000
Syringomyelia (syrinx) is 1 in 40,000
Chiari is 1 in 1,000
1q44 deletion is 1 in 1,000,000
That doesn't factor in delays and causes for that nor the other micro-array results.

Today is rare disease day. My daughter is rare indeed.
Muenke is 1 in 30,000
Some of the issues she has are unknown in stats.

I only posted those that were at least 1 in 1,000
My children are rare gems indeed.

Yet here my children are. Not letting the world bother them here. They love each other and hearing them both squeal over seeing the other one is so worth it.

Right in the middle of typing this post I got the phone call with my son's sleep study results. All borderline they say but not sure what stance the neurosurgeon will take. Yet coming back to this post and seeing the pic of my kids walking makes me smile among the anxiety my heart feels.

I'm also listening to Live on Forever on repeat again. lol *sigh* .........

No matter what I get told or what our "odds" are, I will always love my rare gems because no matter what the world has thrown at them thus far, they will always shine. They have rare genes and are rare gems.

Blessings!
~ Special Momma ~