Inclusion Daily Express -- Disability Rights Advocates Rally To Prevent Doctors From Pulling Toddler's Ventilator

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Disability Rights Advocates Rally To Prevent Doctors From Pulling Toddler's Ventilator
By Dave Reynolds, Inclusion Daily Express
March 22, 2007

AUSTIN, TEXAS--Disability rights groups are rallying to show support for Catarina Gonzales in her efforts to keep doctors from removing her 16-month-old son, Emilio, from the ventilator that helps him breathe.

Tuesday night, an ethics committee at Children's Hospital of Austin gave Ms. Gonzales until 5 p.m. on April 10 to find another hospital to treat the child, who has been diagnosed with Leigh's disease, a medical condition which affects the central nervous system and eventually leads to an early death.

Under the Texas Futile Care Law, doctors can remove life-sustaining treatment from a child when they determine that it would not be in the child's best interest to be kept alive -- regardless of the parents' wishes.

Advocates from Not Dead Yet, ADAPT, the Feminist Response in Disability Activism, and other disability groups are urging Texas Governor Rick Perry to intervene on behalf of Emilio and order the hospital to keep the boy alive. The groups are also encouraging advocates to write letters to lawmakers and to sign a petition denouncing the law as "cruel and inhumane".

"It is not the severity of Emilio's illness that is at issue here," the petition reads. "Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections."

At the time of this writing, more than 300 disability advocates and groups had signed on in support.

"That we fight for those on the margins is incredibly important, more important than I can adequately put into words," wrote Nick Dupree, who uses a ventilator, on his weblog.

In the meantime, a bill making its way through the Texas Legislature would keep doctors from withdrawing life-sustaining treatment long enough for family members to transfer a patient to another hospital or doctor.

One news story quoted Ms. Gonzales, a single mother, as stating that her son's treatment is being paid through Medicare and Medicaid, the joint state-federal health care program.

Related:
"Should it be up to hospitals to decide when treatment stops?" (News8 Austin)
http://www.news8austin.com/content/headlines/?ArID=181211&SecID=2
"Saving Emilio" (Nick Dupree's Blog)
http://nickdupree.blogspot.com/2007/03/saving-emilio.html
Petition: Stop Emilio Gonzales 10-day Death Countdown
http://www.petitiononline.com/emilio16/petition.html

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