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Sepsis: The Uncontrollable Killer

sepsis

Just hours before he fell ill with sepsis and went to the hospital, and never went home.

Ariana-Leilani has been diagnosed with neutropenia — low immunity causing high risk of infection.   Although she can look perfectly normal, a few hours can mean the difference between life and death.   Neutropenic patients are particularly prone to sepsis, which is the most common killer of Americans.   It is an infection can suddenly turned into the life-threatening condition called septic shock.

Most vexing about sepsis is that doctors can only treat the symptoms. They don’t have an effective treatment for the underlying condition — antibiotics don’t work.

One thing that can help is prompt medical attention — especially when an infection is accompanied with some of the symptoms of sepsis, such as confusion, rapid heartbeat, shaking and skin rash.   In a neutropenic patient, like Ariana-Leilani, GCSF is one of the medicines that can boost the immune system.

Read more: Sepsis, A Wily Killer, Stymies Doctors’ Efforts To Tame It

Please sign Ariana-Leilani’s petition.

Takes Two Minutes, Sign the Petition — Make a Difference

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TAKE TWO MINUTES ADD YOUR VOICE TO SHOW YOUR SUPPORT
TO SAVE HER

Why We Cannot Take a Child’s Illness for Granted?

Thousands carol to fulfill dying girl’s wish in Pennsylvania.   Delaney Brown, 8, of West Reading, Pa., was dying of a rare form of leukemia but her community gave her all the support it could.  Brown also got to talk to pop star Taylor Swift on her birthday.

Ten thousand people in Pennsylvania came out to sing to a terminally ill eight-year-old girl who has given them much inspiration during her courageous battle with cancer.   On Saturday an estimated 10,000 people visited the home of Delaney Brown in West Reading Pa. The group sang songs and fulfilled one of the dying girl’s last wishes — a huge holiday sing-along outside her house.   Laney arrived home from the hospital Thursday, Dec. 19, according to her “Team Laney” Facebook page. Her doctors have said her rare form of leukemia means she only has a few days or possibly weeks left to live.

She died on Christmas day.

Tell Mayor Vince Gray and President Obama to stop taking Ariana-Leilani’s life threatening illness for granted.  Let’s help Ariana-Leilani before it is too late; sign her petition today: http://www.ariana-leilani.com

Read more: http://www.nydailynews.com/news/national/thousands-carol-fulfill-dying-pa-girl-article-1.1556833#ixzz2oWKqTOOs

http://social.newsinc.com/media/json/69017/25467232/singleVideoOG.html?type=VideoPlayer%2F16x9&videoId=25467232

How Plerixa Fights Neutropenia

English: Reference ranges for white blood cell...

Ariana-Leilani suffer from Severe Chronic Neutroepnai.   Neutropenia is a condition characterized by the lack of a type of white blood cells, also known as neutrophils, in one’s blood circulation. Patients with neutropenia who receive plerixafor become prone to oral, skin, genital infections and in worst cases, a fatal whole-body infection.

Previously, it was known that Plerixafor increases the concentration of these white blood cells in the blood by inhibiting a protein called CXCR4. This inhibition prevents neutrophils in the blood stream from returning to the bone marrow, which is the primary compartment where the white blood cells are stored and released. It is therefore commonly accepted that the efficacy of the drug arises only from the release of these white blood cells from the bone marrow.

However, scientists at SIgN found that the inhibition of CXCR4 by the drug actually plays a dual role – it increases the neutrophil count in the blood through their release from the lungs, while simultaneously promoting their retention in the blood stream. Results of the study were published in the Journal of Experimental Medicine (JEM).

Discovery of this additional mode of action not only provides a deeper understanding on the drug’s mechanism; it also contributes to a more effective use of the drug, which may help to reduce the risk of bacterial infections in neutropenic patients.

“We have identified the precise mechanisms of plerixafor treatment, which has important implications on its usage. We can understand through this study the effectiveness or limitations of the drug on certain patients and thereafter craft new clinical approaches to better treat them. Our study forms a conceptual framework to establish improved therapeutic strategies for neutropenia,” said team leader Dr. Ng Lai Guan from SIgN.

The article can be found at: Devi S et al. (2013) Neutrophil mobilization via plerixafor-mediated CXCR4 inhibition arises from lung demargination and blockade of neutrophil homing to the bone marrow.

Sign the petition to make sure that Ariana-Leilani gets the life saving medicine to fight her severe chronic neutropenia:

GoPetition for ariana-leilani

#weneeddiversebooks Buy a Children’s Book, Help Heal a Child — “The Day the Sun Promised to Smile FOREVER!,” (Day 12 of 19 Days of Activism)

The Day the Sun Promised to Smile Forever for Ariana-Leilani

Get a Great Children’s Book for the children in your life, and help heal a child.  “The Day the Sun Promised to Smile FOREVER!,” tells the story of the Sun who forgets why he is so important for others, and only finds out when he encounters Little Leilani.   After going to the North, South, East and West, to look for a place to rest, the Sun finally joined the children at the Big Sun Dance Festival. The storyteller gathered everybody for a special story about a special girl called “Leilani”. Sadly Leilani is unwell and the one thing that makes her feel better is waking up in the morning to look at the big bright yellow Sun. The Sun was very sad to hear about the story of Leilani and promised to smile FOREVER and NEVER to be grumpy again. So that when Leilani and other little boys and girls feel sad or unwell, they can look at the big bright yellow Sun and know that the angels are there watching over them!

The book is beautifully illustrated by Conny Hermann, with the words of poetry by Dumi Senda.

Sales of the book go to benefit the children’s camps of Innocence in Danger.  Innocence in Danger (IID) is one of the largest privately funded non-governmental organisations (NGO) in the world. With a presence in six countries – Switzerland, France, Germany, the USA, the UK and Colombia – IID provides legal, medical and social services to victims and their parents. In addition, IID concentrates on fostering real political change and awareness through its many advocacy and lobbying activities.

Order online today: “The Day the Sun Promised to Smile FOREVER!”   Also available in German.*

Dedicated to Ariana-Leilani, by Dumi Senda and Conny Hermann, for the Benefit of Innocense in Danger Children’s Camps.

You can be the “Sun” for Ariana-Leilani to help make her better by signing her petition, today:

GoPetition

Der Tag an dem die Sonne versprach für IMMER zu lachen- Fur Ariana-Leilani

Innocence In Danger Switzerland

Dumi Senda / Conny Herrmann

Die Sonne war nie zu einem Lachen aufgelegt. Jedes Mal, wenn es Zeit war aufzugehen, beschwerte sie sich…: Fur Ariana-Leilani

Nachdem sie im Norden, Süden, Osten und Westen einen Platz zum Ausruhen suchte, traff die Sonne schließlich die Kinder im Big Sun Dance Festival. Der Erzähler versammelt alle für eine besondere Geschichte über ein besonderes Mädchen namens “Leilani”. Leider Leilani fühlt sich nicht wohl und die eine Sache, die ihr hilft sich besser zu fühlen, ist beim Aufwachen am Morgen auf die große helle gelbe Sonne zu schauen. Die Sonne war sehr traurig über die Geschichte von Leilani und versprach, IMMER zu lächeln und NIE wieder mürrisch zu sein. So dass, wenn Leilani und andere kleine Jungen und Mädchen traurig sind oder sich unwohl fühlen, können sie rauf zur großen leuchtend gelben Sonne schauen und wissen, dass die Engel da sind und über sie wachen!

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The US Must Respect Human Rights, Stop Spying on Its Allies and Sign the UN Convention on the Rights of the Child

Official photographic portrait of US President...

Official photographic portrait of US President Barack Obama (born 4 August 1961; assumed office 20 January 2009) (Photo credit: Wikipedia)

The recent revelations of US spying on allied leaders is part of a greater public relations problem of the US: appearing to exempt itself from the rules that apply to other countries.

The moral authority of the US is at an all time low, and the diminished view is, for the most part, the fault of the US itself.   Its failure to ratify the UN Convention on the Rights of the Child (UNCRC) exemplifies the problem and is having detrimental life threatening effect on children in the US.

The US helped draft the UN CRC and even signed it when it was originally adopted.  However, after 20 years the US is the only developed country that has not ratified it.    The failure of the US to provide life saving medicine to dual citizen, German-American Ariana-Leilani after six years of suffering is a direct consequence of the US failure to respect the international rights of children living within its borders.

It is time for the US to respect 10 year old Ariana-Leilani’s rights and for the US to ratify the UN Convention on the Rights of the Child.  It is time for the US to join the rest of the world.

Join the thousands of others who have signed the petition urging President Obama to immediately take action to save Ariana-Leilani and to ratify the UNCRC.

GoPetition for ariana-leilani

Great Children’s Book: “The Day the Sun Promised to Smile FOREVER!,” Dedicated to Ariana-Leilani

NOW AVAILABLE IN GERMAN:

Get a Great Children’s Book for the children in your life.  “The Day the Sun Promised to Smile FOREVER!,” tells the story of the Sun who forgets why he is so important for others, and only finds out when he encounters Little Leilani.

The book is beautifully illustrated by Conny Hermann, with the words of poetry by Dumi Senda.

Order online today: (ENGLISH)  OR GERMAN

The Day the Sun Promised to Smile Forever for Ariana-Leilani
Dedicated to Ariana-Leilani, by Dumi Senda and Conny Hermann, for the Benefit of Innocense in Danger Children’s Camps.
You can be the “Sun” for Ariana-Leilani to help make her better by signing her petition, today:

GoPetition

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President Obama urges prevention of future tragedies like Trayvon Martin, so should he.

Ariana-Leilani

Ariana-Leilani: Suffering from Severe Chronic Neutropenia (Sign Her Petition)

“We should ask ourselves, as individuals and as a society, how we can prevent future tragedies like this.  As citizens, that’s a job for all of us.  That’s the way to honor Trayvon Martin.”.”

– President Obama

How can we prevent the death of Ariana-Leilani?   Urge President Obama to act now to prevent her unnecessary death.  Sign her petition today:

GoPetition

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A Gullah/Geechee Child’s Life at Risk: Saving Ariana-Leilani · Gullah/Geechee Nation

Queen Queth of Gallah/Geechee Nation

Queen Queth of Gallah/Geechee Nation

Queen Quet, Chieftess of the Gullah/Geechee Nation writes in the Gullah/Geechee Nation Website:

Since 1999, I have been blessed with the opportunity to walk the halls and contribute to the global dialogues in the United Nations both in Genevé, Switzerland and New York City in the USA.   When I became the first Gullah/Geechee to speak in this world arena on behalf of my people, the Gullah/Geechees, it was during a time when very few people around the world seemed to know that we existed much less to know about the human rights abuses that we had to endure.  In addition to that, many Gullah/Geechees then and many still do not understand their connection to international law and human rights.  They have fought time and time again to have their civil rights protected and to react to local laws that caused their displacement and destructionment, but they did not believe that taking our issues beyond the boarders of America could be done or would be respected, but when the International Human Rights Association for American Minorities (IHRAAM) heard of the Gullah/Geechee Sea Island Coalition  (www.gullahgeechee.net) and the work that I had been doing for years to help people become aware of Gullah/Geechees as ONE people that needed to be respected and protected, they offered the opportunity to open the door to the global arena not just for me, but for my people.

….

My spirit has reach back across the ocean and up the east coast simultaneously to embrace Dr. King who works for ECOSOC at the United Nations in Genevé, Switzerland and to Ariana-Leilani. I have called for global prayer warriors to join us in sending positive and healing energy to this young Gullah/Geechee descendant for us to keep her strong and reverse the disease and to get her released from this bondage that she is currently in. We want her to be able to walk out of this place where she is being kept and walk into the arms of her mother and family who will protect her rights as a child.

Because individuals do this, that does not mean that the US government shouldn’t be questioned for why this is being allowed to happen on United States soil while folks are being indoctrinated to believe that these types of stories can only happen in other parts of the world.  So, to help further the process of having the US intervene in this situation, please sign the petition to Save Ariana-Leilani: 

GoPetition

Read the more at: A Gullah/Geechee Child’s Life at Risk: Saving Ariana-Leilani

On the Air: The Word of Ariana-Leilani’s Call for Help Is Being Heard

The story of Ariana-Leilani’s plight continues to spread.    Two recent radio programs that featured her story and call for help:

Listen how Ariana-Leilani is not getting needed medicine for her neutropenia, then please sign her petition:

GoPetition