[Congressional Record Volume 163, Number 34 (Monday, February 27, 2017)]
[House]
[Page H1341]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      RECOGNIZING RARE DISEASE DAY

  (Mr. PAULSEN asked and was given permission to address the House for 
1 minute and to revise and extend his remarks.)
  Mr. PAULSEN. Mr. Speaker, I rise today to recognize Rare Disease Day 
to bring widespread awareness to more than 7,000 rare diseases 
affecting 30 million Americans. These individual diseases may be rare, 
but their impact isn't.
  On this particular occasion, I want to remember Chloe Barnes from 
Minnesota, who passed away at the age of 2 from metachromatic 
leukodystrophy, or MLD. Her family founded Chloe's Fight, a foundation 
that is dedicated to supporting research for rare diseases.
  There is no better person to honor and remember Chloe than her older 
sister, Eva, who wrote an essay in Chloe's memory. Eva writes:
  ``My sister died when she was 2 and this is what happened. My parents 
were missing a part in their body. I was fine. But my sister Chloe 
didn't make it. I don't like talking about it. Because it makes me very 
sad. I only tell a few people that she died. She was very funny. I 
loved her so much. Her name was Chloe. She was very brave. My mom and 
dad are doing a foundation called Chloe's Fight. Because every kid 
should have a chance to fight.''
  Mr. Speaker, we should not only remember those suffering from rare 
diseases, but we should continue to support initiatives to find new 
cures and treatments on their behalf.

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