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To: Ohioan from Florida; Goodgirlinred; Miss Behave; cyn; AlwaysFree; amdgmary; angelwings49; ...
Baby Joseph Update

Thread by me.

Baby Joseph Maraachli Heading to Pediatric Hospital Soon

Now that Baby Joseph Maraachli has had the tracheotomy his parents wanted him to have so he could breathe easier as he dies from a rare medical condition that will soon take his life, he will soon be transferred to a new hospital.

Doctors at SSM Cardinal Glennon Children’s Medical Center in St. Louis performed the tracheotomy on March 21 and, in a follow-up statement, deemed the procedure “medically appropriate” after a thorough examination of the 14-month-old boy who a Canadian hospital refused to help.

“It is our hope that this procedure will allow Joseph and his family the gift of a few more months together and that Joseph may be more comfortable with a permanent tracheotomy,” the hospital said. “We ask that you keep Baby Joseph and his family in your prayers.”

The hospital also indicated Joseph suffers from Leigh Syndrome, a rare genetic neurometabolic disorder. Leigh’s disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM), is a rare neurometabolic disorder that affects the central nervous system and it is named for Denis Archibald Leigh, a British psychiatrist who first described the condition in 1951.

The condition typically affects infants between the age of three months and two years and mutations in the mitochondrial DNA or the nuclear DNA cause degradation of motor skills and eventually death. Crucial cells in the brain stem have mutated mtDNA and this causes a chronic lack of energy in the cells which adversely affects the central nervous system and inhibits motor functions. There is currently no cure for the disease and infants like Joseph rarely live longer than two or three years after the onset of the disease.

The Maraachli family now hopes to take Joseph home to die in peace and privacy.

But first, according to a National Catholic Register report, Joseph is expected to be moved soon to Ranken Jordan, a St. Louis pediatric specialty hospital, before heading home with his parents.

Shortly after the procedure, Joseph was baptized and his parents said they were pleased with the developments.

Moe Maraachli, Joseph’s father, commented: “It’s a miracle. My son now has freedom. I’m very happy. My wife and I will respect the second opinion from the hospital in St. Louis. We will accept it with all my heart because Joseph got his human right to get a chance to get a second opinion. When God wants to take his life He’ll take it and nobody can say ‘No’ to God.”

Father Frank Pavone, the director of Priests for Life, talked about that and gave an update in an email to LifeNews.com, saying Joseph’s parents are pleased following the procedure.

Pavone said, “His parents are so happy that he received a fresh evaluation and second opinion, and they now feel that their baby has been given the proper kind of medical care.”

“Also, Baby Joseph was baptized just the other day, and Jerry Horn of our Priests for Life team is now his godfather,” he added.

“No matter how long Baby Joseph lives,” Pavone added, he thanked the “tens of thousands of pro-life activists who took a stand” allowing him to “receive the dignity and treatment he deserves as a human person. So even though we have no idea how much time we have won for Baby Joseph and his family, we have delivered a clear and powerful message to the world. That message is While there is such a thing as a worthless treatment, there’s no such thing as a worthless life.”

Pavone said the medical costs for the family are building up and could reach as much as between $100,000-$150,000 as a grand total.


16 posted on 04/03/2011 10:59:07 AM PDT by wagglebee ("A political party cannot be all things to all people." -- Ronald Reagan, 3/1/75)
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To: Ohioan from Florida; Goodgirlinred; Miss Behave; cyn; AlwaysFree; amdgmary; angelwings49; ...
Terri, we will remember you always!

Threads by me.

Terri Schiavo’s Family Sponsors Symposium on End of Life Issues

The family of Terri Schiavo, through their Terri Schiavo Life & Hope Network, will present a symposium on end-of-life issues before a special Mass to remember and honor the life of the disabled woman.

The mass, which will be held at Ave Maria University, a Florida-based Catholic college, will mark the anniversary of the death of the woman who rose to international attend when her husband sought and won permission from a court to take her life via a painful 13-day starvation and dehydration death.

The symposium, entitled The Erosion of Medical Ethics, will be held on March 31 and Bobby Schindler, Terri’s brother and the director of the foundation bearing her name that tries to help disabled patients and their families, will be moderating the panel and also discuss how the removal of food and water to the cognitively disabled occurs daily in our society.

“With health care rationing on the rise, it is crucial to educate our future attorneys on the moral and legal understandings as it relates to basic healthcare needs such as food and water,” he said. “In the future, these are the very men and women who will be essential to protecting the rights of the cognitively disabled, the elderly and medically dependent.”

He told LifeNews.com, “It is our hope that upon graduation they will be part of our Network of lawyers who fight for the lives of our vulnerable brothers and sisters.”

Speakers include Brother Paul O’Donnell, Dr. Mark Mostert, Kristan Hawkins and Professor Richard Myers. They will discuss Catholic Church teaching as it relates to hydration and nutrition; historical prejudice to people with disabilities; health care and its potential effects on special needs patients; and the legal aspects of the Terri Schiavo case. The symposium is open to law students and faculty of Ave Maria School of Law.

Following the symposium Ave Maria University will host the “The National Mass for Terri’s Day” at the Ave Maria Oratory, located near Naples, Florida. The International Day of Prayer and Remembrance for Terri Schindler Schiavo, and All of Our Vulnerable Brothers and Sisters (“Terri’s Day”) was established in 2007 and is observed each year on March 31, the date of Terri’s death. Father Frank Pavone, the director of Priests for Life, will join again this year as the main celebrant for the event.

The purpose of this day is to foster education, prayer, and activism regarding discrimination against the cognitively disabled, and advocacy for people in situations similar to what Terri and her family faced. 40 Days for Life, a community-based campaign that over a period of 40 days attempts to transform individuals and communities to recognize the value and dignity of human life, will be observing “Terri’s Day” with prayer along with countless others who will be remembering Terri on this day.

The family is also sponsoring a fundraising concert in Ohio in June featuring the Beach Boys.

____________________________________________________

Pro-Life Advocates Remember Terri Schiavo on Death Anniversary

On the anniversary of her 13-day starvation and dehydration death at the hands of her former husband, pro-life advocates are remembering Terri Schiavo and promising to help disabled patients like her.

“We honor Terri Schiavo today, by speaking at the Medical Ethics Symposium at Ave Maria School of Law. Her fight for Life reflects the importance of caring for those with special needs, especially with end of life decisions and prenatal diagnosis,” Hawkins said. “In both cases, pro-lifers need to stand for the most defenseless among us.”

“I have seen this with my own eyes when my son Gunner was diagnosed with Cystic Fibrosis (CF). During my second pregnancy with my son Bear, doctors told me that I should find out if he had CF in order to prevent me from having another child that would suffer with this condition,” Hawkins added.

She continued, “Bear, thankfully, was healthy, but the pressure that mothers face for prenatal diagnosis and aborting children with special needs is tremendous as 90% of Gunner’s peers that are diagnosed with CF in the womb are aborted. That’s an astounding statistic that calls us to action. We must stand for the most defenseless among us, those with special needs in hospitals as well as those in the womb.”

Meanwhile, the staff of the Life Legal Defense Foundation, a pro-life legal group that provided help for Terri’s family during the ordeal, say they “will never forget Terri, nor will we forget her family’s valiant efforts to save her life.”

“Life Legal was privileged to assist the Schindler family in the fight for Terri’s life and as the years go by we continue to receive calls from families in similar situations,” the group told LifeNews. “LLDF board member Brian Chavez Ochoa litigated one such case on behalf of Suzanne Emrich. Ochoa filed a petition that requested the court order nutrition and hydration restored to her cousin, Janet Rivera, who for nine days was denied food and fluids. The petition was granted, and Ms. Rivera’s life was saved.”

Some of the referrals Life Legal receives come from The Life and Hope Network, formerly the Terri Schindler Schiavo Foundation, which Terri’s family continues to help other patients like her.

The pro-life legal group encouraged people to look ahead to potential problems by putting together legal papers to protect the medical care and treatment they want.

“It bears repeating that one of the lessons we learned from Terri’s case is that should you become incapacitated by illness or disability, the person who is your decision-maker could mean the difference between life and death,” the group said. “We encourage you to honor Terri’s memory by protecting yourself with a protective medical decision document.”

The National Right to Life Committee also remembered Terri, saying, “Six years ago today, Terri Schiavo died by court-ordered starvation & dehydration. Remember Terri and see what you can do.”

Following the symposium, Ave Maria University will host the “The National Mass for Terri’s Day” at the Ave Maria Oratory, located near Naples, FL, marking the sixth anniversary of Terri Schiavo’s death.

The International Day of Prayer and Remembrance for Terri Schindler Schiavo, and All of Our Vulnerable Brothers and Sisters (“Terri’s Day”) was established in 2007 and is observed each year on March 31, the date of Terri’s death.

The purpose of this day is to foster education, prayer, and activism regarding discrimination against the cognitively disabled, and advocacy for people in situations similar to what Terri and her family faced. 40 Days for Life, a community-based campaign that over a period of 40 days attempts to transform individuals and communities to recognize the value and dignity of human life, will be observing “Terri’s Day” with prayer along with countless others who will be remembering Terri on this day.

____________________________________________________

‘There’s not a day that goes by we don’t think of Terri’: 6 years since Schiavo tragedy

AVE MARIA, Florida, March 31, 2011 (LifeSiteNews.com) - On March 31, 2005, a Florida woman who was at the center of an intense nationwide controversy took her last breath, after thirteen days without food or water. A bouquet of flowers sat in a vase of water next to the bed where Terri Schiavo lay, forbidden under court order from receiving the water she needed to sustain her life.

Six years later, Terri’s family reverently recalled their loved one’s struggle to live, a struggle that became a measure of America’s conscience after attempts to overrule husband Michael Schiavo’s decision to withdraw her nutrition and hydration went as far as the United States Congress.

Although Terri’s story may have ended, Bobby Schindler, Terri’s brother and founder of the Terri Schiavo Life and Hope Network, told LifeSiteNews.com that today - Terri’s Day - must call attention to the thousands of others who suffer silently in conditions similar to his sister’s.

“This was not an isolated case. What happened to Terri happens all the time in our country,” said Schindler. “There’s tens of thousands of others with the same type of cognitive disabilites that need our protection, our love and our compassion.”

Terri Schindler Schiavo suffered severe brain damage due to oxygen deprivation under mysterious circumstances in 1990. Her family members say that her husband Michael refused rehabilitation therapy for twelve years, which would have greatly improved her condition. Instead, Schiavo, who had moved in with another woman, fought Terri’s family to end her life by removing her feeding tube.

Despite drastic measures by then-Florida Gov. Jeb Bush, the U.S. Congress and former President George W. Bush, Pinellas-Pasco Circuit Court Judge George Greer ended the dispute by forbidding Terri from receiving food or water - whether through a feeding tube or by mouth.

Schindler, who attended a Catholic Mass in Terri’s memory at the oratory at Ave Maria University, said that today there lingers “apathy” and “an enormous amount of misinformation” both about Terri and others like her.

“Terri was not dying, people thought she had some kind of terminal illness ... there was no machines keeping her alive, she simply had a cognitive disability,” said Schindler. “The public just doesn’t know what’s going on. It’s easy to rationalize why we’re doing this to people like my sister.”

The family has been forced to fight not just apathy, but mockery as well: an episode of FOX cartoon show “Family Guy” in March 2010 satirized Terri’s death with a “musical” depicting the Florida woman hooked up to various machines and being referred to as a “vegetable.”

Last May, Michael Schiavo suddenly threatened to sue the Terri Schiavo Life and Hope Network, known at the time as the Terri Schindler Schiavo Foundation, for using his wife’s name and accused the group of mishandling donations, a claim the Schindlers denied.

Schindler said that, after responding by letter to Schiavo’s legal threat, the latter has given no response. “Our issue now is not Michael Schiavo, it’s helping others and trying to protect these people that are getting threatened every day,” he said.

Now, as one of the leading advocates for those with cognitive disabilities threatened with death by dehydration, Schindler says his painful inspiration is never far from his mind.

“There’s not a day that goes by we don’t think about Terri,” he said. “Having to watch a loved one die in such a horrible way - it’s something you never forget. You live with it every day.”

"We will not be silent.
We are your bad conscience.
The White Rose will give you no rest."

17 posted on 04/03/2011 11:05:06 AM PDT by wagglebee ("A political party cannot be all things to all people." -- Ronald Reagan, 3/1/75)
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