[Congressional Record (Bound Edition), Volume 159 (2013), Part 7]
[House]
[Page 9249]
[From the U.S. Government Publishing Office, www.gpo.gov]




                          CDKL5 AWARENESS DAY

  (Mr. WENSTRUP asked and was given permission to address the House for 
1 minute.)
  Mr. WENSTRUP. Madam Speaker, I stand before you today to tell you 
about a rare disorder known as CDKL5.
  Today, June 17, is CDKL5 Awareness Day. This genetic disorder was 
discovered by genetic markers in 2004. Those impacted usually suffer 
from seizures and rarely, if ever, walk or talk.
  My niece, Catie, is one of only 600 known cases in the world. When 
Catie was born just 5 years ago, only 200 children had been diagnosed 
with CDKL5 disorder. Due to the recent discovery of this condition, and 
its resemblance to Rett Syndrome, epilepsy and autism, it's likely that 
there are many children who have been undiagnosed or misdiagnosed.
  Families are forced to turn to the Internet and the community of 
parents because even doctors know relatively little about CDKL5. 
Unfortunately, at this time there's no cure, only hours of therapy, and 
for many, traveling long distances to specialists. Fortunately, CDKL5 
research is taking place.
  The children impacted with CDKL5 disorder cannot talk to you about 
their condition, so the responsibility falls to us to raise awareness.
  My family learns something from Catie every day. It's my hope that we 
can continue to learn more for Catie and the other young people 
impacted by CDKL5 disorder.

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