FA AWARENESS

Emma’s Story2017-09-17T08:50:41+00:00

Emma’s Story

They said, “We had to pick something we were interested in and passionate about!”  So they picked me!!!

My name is Emma Feather and my crazy aunt and uncle are off on an around the world adventure on their bikes!  They are out to have some fun and raise awareness about Friedreich’s Ataxia (FA).  I am from Canada, and live in a little town outside Toronto.

I live with my parents, Ross and Raewyn, my sister Kate, and my two dogs Olivia (who is my service dog) and Ellie.  And, I have Friedreich’s Ataxia (FA)!!

Emma with Oivia and Ellie

Emma with Oivia and Ellie.

They said, “We had to pick something we were interested in and passionate about!”  So they picked me!!!

My name is Emma Feather and my crazy aunt and uncle are off on an around the world adventure on their bikes!  They are out to have some fun and raise awareness about Friedreich’s Ataxia (FA).  I am from Canada, and live in a little town outside Toronto.

I live with my parents, Ross and Raewyn, my sister Kate, and my two dogs Olivia (who is my service dog) and Ellie.  And, I have Friedreich’s Ataxia (FA)!!

I was diagnosed with this progressive neuromuscular disease when I was 6 and a half, and I am now 21 years old.  I was an avid tree climber and quite the tomboy!  My sister and I enjoyed pretending to be Mary-Kate and Ashley and Harriet the Spy.  We spent many an afternoon in our tree fort trying to find interesting things to spy on in our very quiet town.  I have been in a wheelchair full-time since I was about 13 years old.  In 2008, two major life events happened.  The first was my back surgery.  This was done to help prevent any further curvature of my spine; which was brought on by scoliosis; a condition that affects many Friedreich’s patients.  The second, happened while I was recovering from my surgery.  This was the introduction of Friends, the television show, to my life!!!  I have my sister to thank for this treat as it has become my favourite show and my life mission to get everyone I know as hooked on it as I am!  Just ask my family…

Recently, I have become more involved in events organized by official organizations that deal with Friedreich’s Ataxia and more unofficial groups.  In March, I will be attending the National Ataxia Foundation Conference in Denver, Colorado.  This is a great event that helps to raise awareness about Friedreich’s Ataxia and present the most current research being done to fight this disease.  When I get back from Denver, I will be having surgery on my achilles tendons in the hopes that I will get out of my braces, go shoe shopping for some heels, and diversify my shoe collection!!!

In July, I will be attending a more social event known as FA Woodstock for the second year in a row as well.  This great event is held annually and has become a highlight of my summer!  Picture it…an event named after one of the most epic concerts in history, on a ranch in Indiana, with a bunch of people with FA and their families having fun…a highlight indeed!

Even though I am confined to a wheelchair and have recently noticed a substantial loss of vision I have been able to achieve so much!  Some of these accomplishments are:  a college education, downhill skiing with Track 3, sailing, and a lot of traveling.  I am very lucky to have such a great family and a great group friends around me.  They have given me so many opportunities and adventures!  I can’t wait to see what else is around the corner.

Emma's Adventures

Adventures.