[Congressional Record Volume 159, Number 134 (Wednesday, October 2, 2013)]
[House]
[Page H6156]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
MITOCHONDRIAL DISEASE CAUCUS
(Ms. ROS-LEHTINEN asked and was given permission to address the House
for 1 minute and to revise and extend her remarks.)
Ms. ROS-LEHTINEN. Mr. Speaker, I first heard about mitochondrial
diseases, which are fatal, from my chief of staff, Art Estopinan, who,
together with his lovely wife Olgita, have been caring for their baby
after he was diagnosed with TK2 mitochondrial DNA depletion syndrome,
which has left Arturito, Jr., unable to move his fingers and toes, as
you see in this poster, putting him in constant need of mechanical
support to breathe and receive nutrition.
They were informed that their baby son, Art, Jr., would live only a
few months, as there were no known medications. But thanks to the
experimental treatments that Arturito is receiving from Columbia
University Medical Center, medical care at Johns Hopkins Pediatric
Hospital, and at the Kennedy Krieger Institute, the doctors have
established a discharge date for mid-October, an unimaginable
expectation just a year ago.
I pray for Arturito, Jr., and babies like him every night. I urge all
Members to contact our office to make sure that they can learn more
about these diseases by becoming a part of the Congressional
Mitochondrial Disease Caucus. Let's look at Arturito, Jr., and let's
save him and the countless others.
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