Wednesday, February 29, 2012

Rare Disease Day

Today, we raise our voices for Finley and for all children who suffer from a rare disease.
Today our family and friends wore red, their Finley's Fighters shirts, their wristbands, their braille shirts - in honor of our little girl.
On of my childhood friend's little boy wrote a book report using our book that Mat and Finley wrote together.
He shared it with his class today - how cool is that?
 I talked some of the people who showed their support for Finley today into sending me a picture of themselves. 
Today kids in Finley's class wore red and we sent them all a Finley's Fighters wrist band to wear.  Arlington's class wore Finley's Fighters wrist bands.  Cainan wore his Finley's Fighters shirt and got to talk to his class about Finley.

  Mat is in Washington DC today talking to the National Institute of Health.  Family and friends are sending letters to their local congressman/woman to express the need for more money and research for rare diseases.
People are spreading the word today about Finley, LCA, and our cause. 
 Our video is being passed around so that more awareness about RDH12 is raised.
  Today is a great day.
 But today - for us - is no different than yesterday and no different than tomorrow.  We push this hard every day for Finley.  It is always on our minds.  Every day we don't have a cure is another day closer to total blindness for her. 
We will never quit making this fight the forefront of our lives until we report that Finley's LCA is cured. 

1 comment:

Anonymous said...