Friday, July 5, 2013



Most people with "locked in" syndrome choose to die.  This man is Remarkable.
 - There's a new petition taking off on, and we think you might be interested
in signing it:
Governor Pat Quinn, Illinois: Continue nursing services for Patrick Stein.
By Mary Jo H.
Northfield, Illinois
Sign Mary Jo's Petition
"I'm asking the state not to quit on me." - Patrick Stein
Patrick Stein is a 20 year old young man whose life changed in the blink of an eye
on 10/10/10. Patrick, who was once a water polo captain, had a brain stem stroke
and now has Locked In Syndrome.
He is now completely paralyzed except for the use of his eyes and eye lids. Though
he cannot speak, he is 100% present and communicates with eye movement.
 There was no damage to his cognitive skills, sense of humor or spirit -- as his
former nurse and a friend and neighbor, I can attest to that!
Patrick currently receives skilled nursing care at his home through a State of Illinois
waiver program operated through the Illinois Department of Healthcare and Family
Services. The care provided by these nurses keeps Patrick alive. Without them he
is at risk of losing his life.
His care is so complex, and his condition so labile, without the care of a skilled
nurse, critical changes will go unnoticed and Patrick could die.
Patrick recently had his tracheostomy tube removed. He still has an opening in his
throat that connects with his trachea -- this opening is called a tracheostomy. Because
the tube was removed, the State of Illinois has downgraded his level of care and
on July 16, 2013 his nursing care will be stopped. But there is NO change in the
care that Patrick needs to stay alive.
The state's alternative is to pay for care in a nursing home. It is impossible to
provide the level of care Patrick needs in a nursing home. If he is transferred to
a facility, he will die. Patrick does not have the ability to call out or trigger
an alarm. If he is in pain, danger, frightened or suffering in any way, he cannot
get the attention of his caregiver. In a nursing home, he will not have the constant
care that ensures he is safe. Patrick needs this care.
My life changed the day I met Patrick.
Working with him has been one of the most challenging and amazing experiences of
my nursing career. Over the past three years, I have received so much more than I've
given. Patrick has a great team of direct care nurses, allowing me to step back and
enjoy my role as friend, neighbor and back up nurse. It is a privilege to know this
incredible young man and his family.
It breaks my heart to think the state of Illinois could be putting Patrick in such
a dangerous situation.
Patrick is an incredible young man whose spirit has never wavered.
Please help us petition the state to reverse their decision and give Patrick a fighting
chance to live, heal and continue to grow into the amazing man he is destined to
Sign Mary Jo's Petition
The person (or organization) who started this petition is not affiliated with did not create this petition and is not responsible for the petition content.
Mailing Address: · 216 W 104th St., #130 · New York, NY 10025

Tell Congress: Provide 50 million Africans with electricity for the first time.
1 click adds your name.
Add your name by clicking here

Sometimes electricity can mean the difference between life or death.
I grew up in Lagos, Nigeria, but a lot of my childhood was spent in the family village
in Delta State. I never really cared that our house had no power during the day.
Nobody's house did. And our back-up generator meant I could still treat myself to
tv on special nights.
No electricity never seemed like a big deal. Until my cousin had a car accident.
The first hospital we went to had no power. My cousin was bleeding and he needed
immediate surgery. But how do you operate in the dark?
We went from hospital to hospital. Everywhere was pitch black. We finally found a
clinic with a functioning generator. But we had to go find diesel fuel to make the
generator work.
This is not the only story I can tell. Just weeks ago, a dear friend lost his wife
because she had a c-section in the dark.
It's time to put an end to this.
The call for energy is getting louder. President Obama just announced a new initiative
that would double access to power in sub-Saharan Africa - and give people the energy
they need to lift themselves out of poverty.
And last week a bill was introduced in the House by Foreign Affairs Chairman Ed Royce
(R-CA) and Senior Democratic Congressman Eliot Engel (D-NY) that would bring electricity
to 50 million Africans for the very first time.
I'm going to do everything I can to make sure this bill passes, but I can't do it
Add your name and let our representatives know that it's time to electrify Africa.
The petition reads:
Dear Congress:
Please help electrify Africa by supporting the bill that will provide 50 million
people with access to electricity for the first time. This bill will transform people's
lives - and keep us on track to end extreme poverty by 2030.
It's crazy that this is our life. This new bill could mean the difference between
life and death for families in Africa. But only if our representatives know we want
them to act.
Add your name right now - and we'll deliver it in-person to members of Congress over the coming weeks.
Thanks for using your voice.
Edith Jibunoh
Policy Director, ONE
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Copyright © 2013 ONE, All rights reserved.
Our mailing address is:
ONE Campaign
1400 Eye Street, Suite 600
Washington, DC

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