Friday, March 27, 2015

A Unique Guest Post

I Am hoping to incorporate a new "series" on this blog which will include blog posts from individuals living with RS. If you or someone you know would like to contribute please let me know via the contact information in the right column. The first blog post in the "Life With Rhombencephalosynapsis" Series comes from my girl, Abby.

Written By Abigail Fescoe:

Heres the thing I have RS. People think I'm different that way. But I'm not. Here's a symptom of RS, I roll my head a whole lot. People like classmates, friends in and out of school, ask why do you roll your head? I've told some people why and from all that I learned, if I do people just stop asking and I can be myself. Another symptom is that balance is hard. I can't do activities that need really good balance, like the balance beam. Thats why I have to take PT. But I have taken PT since preschool all the way till now [which I'm in 2nd grade] and probably for a while longer. I also look at other people and what they're doing, and I get better and better. Here's a little story of my bad balance; me a few years ago me and my twin sister Grace were all riled up and it was dinnertime. At dinner we were laughing and jiggling around , and accidentally I slipped off the bench. Grace tried to grab me. But she did not. I fell on my tooth. It hurt VERY badly. Daddy [brian fescoe] picked me up. Grace was really sad and sorry when daddy figured out I broke my tooth. Later my mom [kristen fescoe] took me to surgerey. it was not fun in surgery.

This all written by a seven year old girl. It is a remind of both the struggles kids with RS face as well as their incredible power to overcome obstacles. Abby enjoyed writing this so much I think more will come from her. I do hope that her words help some of the newer families to the RS circle. These kids can overcome so much. They're miraculous!

Posted by Kristen Fescoe, March 2015


  1. Thank you for this post and your blog! This gives me so much hope for my two year old daughter with RS. She too struggles with balance and roll's her head, which isn't as bad as it use to be.

  2. This is so interesting. Thank you!! Yours is the first blog I've found about RS.