[Congressional Record (Bound Edition), Volume 161 (2015), Part 11]
[Extensions of Remarks]
[Page 16048]
[From the U.S. Government Publishing Office, www.gpo.gov]




              HONORING THE LIFE OF MEGAN ELIZABETH BARRON

                                 ______
                                 

                             HON. JIM COSTA

                             of california

                    in the house of representatives

                        Friday, October 9, 2015

  Mr. COSTA. Mr. Speaker, I rise today to pay tribute to the life of 
Megan Elizabeth Barron, who recently passed away on September 10, 2015, 
at the age of 24. Megan was an extraordinary person, and she will 
always be remembered as a young woman who lived her life with purpose 
and great dedication to her family, community, and strangers via her 
writing and advocacy for dystrophic epidermolysis bullosa.
  Megan passed away surrounded by her loving family at the University 
of Miami Hospital. She was born on January 26, 1991, in Pittsburgh, 
Pennsylvania to Richard E. Barron and Elizabeth Ward. Megan was born 
with dystrophic epidermolysis bullosa, an extremely severe skin 
condition that led her to write about her life experiences and further 
inspire others. She was an extremely talented young woman who was 
admired by many and always asserted her right for respect.
  Regardless of the obstacles Megan encountered she remained positive 
and was a scholar who focused on her studies. Megan graduated 
salutatorian of Coral Springs High School in 2009. She went on to 
graduate from Trinity College of Arts and Sciences at Duke University 
in 2013. While at Duke, Megan was inducted into Phi Alpha Theta history 
honor society and she founded the Duke Disability Alliance.
  Among her many accomplishments Megan was a National Merit Commended 
Scholar, a National Advanced Placement Scholar of Distinction and a 
Florida International University book award winner. She received the 
Miami Herald Silver Knight Award in general scholarship and the annual 
Spirit Award from the Dystrophic epidermolysis bullosa Research 
Association (DebRA) of America. Megan also interned with the White 
House, Senator Bill Nelson of Florida's legislative office and the 
Library of Congress. During her last two years Megan served as the 
Social Media Coordinator for the National Organization for Rare 
Disorders (NORD).
  Megan was a model of comportment in the face of daunting adversity. 
Despite her illness, she never seemed to let it get in her way. She 
enjoyed history, food, flowers, travel, poetry, writing, the Pittsburgh 
Steelers, ballet, sailing, French culture, politics, and the arts. 
Megan is survived by her father Richard E. Barron, mother Elizabeth 
Ward, stepfather James Patrick Ward, and brother Jason R. Barron.
  The poem below titled The Butterfly Child written by Megan back in 
2003 perfectly depicts her inspiring persona and the way in which she 
served as a role model and inspiration to those that she met.

     A fragile little butterfly
     Whose been cursed but doesn't know why
     Who sees the world through different eyes
     And soars with the wings for the butterflies

     For the precious little butterfly
     Is different and she knows
     That crying doesn't ever help
     But sometimes her struggling shows

     To be a butterfly in such a world
     Where people are so vain
     She tries to keep her chin up
     She knows she can't complain.

     Although her physical differences
     Make life become a fight
     She has been blessed in different ways
     And sheds the world with light.

     Though people are judgmental
     To the precious butterfly
     Her mind is one in a million
     Her mind is her tool to fly

     The curse has been put on the butterfly
     Yes, she knows it's true
     But she won't let it stop her
     From soaring to the sky

     The Miraculous little butterfly
     Puts up a mighty fight
     But that won't stand in this Butterflies way
     From spreading her inspiring light

  Mr. Speaker, it is with great respect that I ask my colleagues in the 
House of Representatives to join me in saying farewell to a young woman 
who embodied passion and inspiration, Ms. Megan Elizabeth Barron. Her 
genuine character and loving commitment to life will be greatly missed.

                          ____________________