Wednesday, June 10, 2015

Congenital Scoliosis Awareness Month

I was contacted a few days ago asking if I would share Ethan's journey on a blog that informs people on congenital scoliosis. Of course, I didn't mind, I love helping people out and giving what information I can to help anyone along this journey. I have 1-2 people a week write me on Facebook or Ethan's VEPTR page asking for info and trying to get care for their child. It's great to be able to help others out, especially when VEPTR moms were all so helpful to me in the beginning, it's a scary thing. There are many types of scoliosis, but congenital scoliosis is when a child is born with something structurally wrong with the spine that is causing the scoliosis. It's not what you remember getting tested for in gym class when you had to wear the bathing suit to school. Most times, it's caused from hemivertebrae, generally more than one, which offsets the spine and gets worse as they grow. Surgical intervention is usually required, whether you get the hemivertebrae removed and the spine fused, or, if like Ethan, you get VEPTR implants because it's already affecting your lungs. So, I wrote up our story, tried to keep it short and to the point...and here it is! He's a few stories down, Ethan's Congenital Scoliosis and VEPTR Story. http://norasjourney-early-onset-congenital-scoliosis.com/faces-of-congenital-scoliosis/