# @heypaigeflamm on Instagram

- **Type:** Image
- **Original URL:** https://www.instagram.com/p/Cah0oe6pKCJ
- **Gondola URL:** https://gondola.cc/posts/79123269-heypaigeflamm-instagram
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/100f999701.jpg
- **Posted:** 2022-02-28T16:56:34.000+00:00
- **Account Owner:** Paige Flamm (@heypaigeflamm) — https://gondola.cc/heypaigeflamm

## Caption

Feb 28th is National Rare Disease Day! I never would have anticipated this being a day I’d advocate for, but I’m grateful for the last seven years with this little girlie. Middle Interhemispheric Variant is the rarest form of Holoprosencephaly. It makes up only 2% of kids with HPE, but also happens to be one of the most mild variants of the disorder. Most kids with HPE are given a 1% chance of living to 6 months if they survive the 1/10,000 chance of surviving pregnancy. We’re currently riding the 15% chance to age 10 and defeating the odds each and everyday. When we picked Kinsley’s name I wanted it to be super meaningful to the life she would live. The English translation of Kinsley means victory and the Hebrew translation of Mae means bitter. I loved the idea that she would have a victory over something super bitter, no matter how long or short of a time she was here. She’s had so many victories over such bitter circumstances the last seven years and I’m just so grateful for every single moment. I love our Kinsley Mae more than my heart could really ever express. 💜

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#RareDiseaseDay #Cerebralpalsy #holoprosencephaly #mivh #raredisease #hpe #syntelencephaly

## Stats

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- **Likes:** 88
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## Credits

No public credits are recorded here. This does not identify who made the post.

## Tags

syntelencephaly, hpe, rarediseaseday, mivh, holoprosencephaly, raredisease, cerebralpalsy

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