Smiley Sheana

This is Sheana. She will be 34 years old in September 2016. She lives in Chincoteague Island, Virginia. This picture captures her personality perfectly and was taken at the 2014 ULF conference in Baltimore.

We first noticed that something wasn’t “quite right” with Sheana when she began to walk. That was the beginning of our journey.

The Shriner’s were wonderful to us, providing specialty doctors and equipment all through her childhood. Unfortunately though, we had many years of a CP diagnosis, then a mitochondrial disorder, and finally in 2012 we were confirmed with VWM.

Her ability to walk has declined to being fully dependent on a wheelchair and she can (and sometimes does) provide assistance with transfers. What a roller coaster ride it has been. Sheana loves to play on the computer, color, can read, count, do basic math addition (and subtraction sometimes), and loves to talk to everyone. She is a very social being. She also loves to travel. Help us find a cure!

The purpose of these stories is to give families extra love in a time it might be needed, and create ACTION for these kids. Whether it’s with time, effort, good thoughts or donations… do what you can to help spread the word.

To donate: https://www.crowdrise.com/findacureforvwm

Photo credits ; ~ Joe Changle Sr.. — United Leukodystrophy Foundation — 2014 Conference: Baltimore, MD

Written by Sheana’s mom.