Tag Archive | severe chronic neutropenia

Neutropenia Superhero

neutropenia superheroNeutropenia is a disorder seen in individuals with an abnormally low count of neutrophils, a type of white blood cell that fights off infections within the body. Ryder, who was diagnosed in his infancy and is now almost 2, has endured countless needle pricks and hospital visits and faced several wrong diagnoses but kept fighting through it all. His continued strength and courage over the past year has resulted in his superhero status, and he is now known as Super Ryder.

Learn more: Superhero

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

Sign the Petitions to Come Together

The USA is in turmoil as the federal government is shut down because the politicians in Washington DC cannot get along.   Starbucks wants to help.

Washington DC is where Ariana-Leilani lives and where her illness, Severe Chronic Neutropenia, is going untreated.   Ariana-Leilani is known as the “Little Ambassador,” because she brings people together.

So, help the USA and help Ariana-Leilani by signing two petitions: one for her and one for the USA:

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GoPetition for ariana-leilani

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Cover the children affected by HIV/ AIDS with hope and love

Like children with AIDS, Acquired Immune Deficiency Syndrome, Ariana-Leilani looks healthy. Yet like children with AIDS, without treatment with medicine and full testing, Ariana-Leilani will eventually die from a broken immune system from Severe Chronic Neutropenia.

All children have a right to life, treatment, and protection from medical neglect and abuse.

On world AIDS Day lets remember all children with broken immune systems. Support Ariana-Leilani’s right to life and treatment for her broken immune system.

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The Future for Children Worldwide – an AIDS Free Generation: Only if we all Keep the Promise:

St. Petersburg Russia Shows International Support for Ariana-Leilani to Receive Life Saving Medicine

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FOR IMMEDIATE RELEASE: Ariana-Leilani Coalition

The people of St. Petersburg, Russian, took up the fight to help save Little Peace Ambassador Ariana-Leilani for the United Nations International day of prevention of violence and abuse against children and youth (19 November)

With The National Alexander Theater as a backdrop on Nevsky street, the people of St. Petersburg formed international bonds of humanity and compassion with  9-year old Ariana-Leilani to show their support for Ariana-Leilani, who was thousands of miles away in Washington, DC.   Ariana-Leilani continues to be denied life-saving medicine and  treatment for her life-threatening very rare blood and bone marrow disease, Severe Chronic Neutropenia.

As the line grew for more to leave their messages and pictures of support, the  beautiful city  square, overcast with clouds, raining on this cold winter day, was filled with the compassion, humanity, well-wishes and pictures from shoppers, tourists, workers, children, and families.  They each placed over a  hundred messages of humanity, compassion, support and love that filled the squares on the banner for Ariana-Leilani.

The event was sponsored by International Youth for Human Rights Russia and the Ariana-Leilani Children’s Foundation International with the permission and support of the local Russian Government. Both organizations educate about human rights. The international youth for human rights volunteers gave out flyers on the Human Right Number 1: “The Right to Life”, along with the 30 human rights of the UN Declaration of Human Rights.

Join them, sign the petition today:

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Another Parent’s Letter of Support for Ariana-Leilani to Get Life Saving G-CSF (Neupogen)

In hospital with Neutropenia

In hospital with Neutropenia (Photo credit: jennifrog)

Ariana-Leilani has received many support letters from parents of children with Severe Chronic Neutropenia.   Here is an excerpt from one by the letters:

“I am writing on behalf of Ariana-Leilani whom is diagnosed with neutropenia. I have learned that she is being denied only the medication currently available to treat this life threatening disease.  The medication Neupogen, is her only chance of survival and I feel sickened to learn that Ariana-Leilani would be denied Neupogen by her father and medical doctors. I will do all that I can to help for this child to receive proper medical care.
“My daughter,[], is diagnosed with neutropenia and receives a daily injection of Neupogen. She receives medical treatment from some of the best doctors in the country. I believe that without this medication my daughter would not be alive today. And, it outrages me to hear that a father and medical doctor are denying this beautiful child this necessary medication. Something must be done immediately. I am very involved in the neutropenic community and highly educated in the area of neutropenia. And, I urge you to have this child put on Neupogen.
“Most doctors are not aware of how serious neutropenia is, and they do not know how to properly diagnose. That is why children unnecessarily lose their life to this disease. Before [] was put on Neupogen I was told that she could have become devastatingly ill or lost her life. Even on Neupogen, neutropenic patients are highly susceptible to infection. And, each patient needs to be monitored by one of the neutropenic experts through the Severe Chronic International Registry and the National Neutropenia Network.
… PLEASE help this child and get her the proper medical care that she needs. “
Here is another example:

08/05/2012

To Whom It May Concern: My son suffers from Congenital Neutropenia, and Neupogen has been lifesaving for him. When we first discovered his condition – his ANC was at zero; he was suffering from mouth ulcers; and spiking a fever. Without Neupogen, his body may not have been able to fight off the infection in his body on its own. Before he was put on regular Neupogen, we quarantined ourselves at home and avoided all friends or family who might have the slightest cold. The risk of serious infection was simply too high. In addition, my son’s height and weight had fallen to the 5th percentiles. Once on regular Neupogen not only are we able to enjoy a “normal” life, but also he has returned to the 50-­‐75th percentiles. Without Neupogen, we would live in constant fear of life or death infections – we cannot imagine ever denying this to our son.

Sincerely,

Nathan and Mariel Lewis

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Severe Chronic Neutropenia patient denied treatment in NJ / Philadelphia

Read about another person who is being denied proper treatment and must travel to another state to find a doctor who understands Severe Chronic Neutropenia, its consequences and treatment.

Don’t let this happen to 9 year old Ariana-Leilani.  Please sign her petition today.
GoPetition

Children the world over are neglected and abused in silence.

Children the world over are neglected and abused in silence.

In the case of Ariana-Leilani King-Pfeiffer, a ten-year-old dual German-American citizen, the child’s father is denying her access to medication for the rare and life-threatening condition Severe Chronic Neutropenia (SCN). Yet the circumstances of her abuse go much deeper.

On Sept. 11 her dire circumstances were discussed during the appropriately titled “Saving Ariana-Leilani—when all USA Protection Systems Failed” on the blog talk radio show “Missing and Exploited” hosted by sex-trafficking advocate Glendine Grant.

“Together we are going to fight this,” Grant said at the start of the show.

Those involved in the discussion included Dr. Ariel King, Ariana-Leilani’s mother; Connie Valentine, co-founder of California Protective Parents Association; Jessica Burnham, media consultant for the Save Ariana-Leilani Coalition; Dara Carlin, president of Breaking the Silence; Roy Morris, pro bono public interest and human rights attorney; and the courageous mother of a 3-year-old son with Severe Chronic Neutropenia who we will be calling “Amanda” for the sake of anonymity.

“I am very grateful to speak, not just about my daughter Ariana-Leilani, but all children who find themselves in a Bermuda Triangle, of not getting whatever they need to survive and live,” King said.

She proceeded to explain that SCN, the condition her daughter has along with only one in one million others worldwide, can be acquired through chemotherapy treatment, from a viral infection, an autoimmune response and some individuals are born with the condition.

However, Ariana-Leilani showed no signs of illness until age five, when she began to have constant colds, flus, and runny noses.

“With some prompting from some physicians who reported her issue to Child Protective Services, Child Protective Services then demanded that she be taken to a hematologist/oncologist,” King said.

Within one year she had full testing, minus a toxicology exam or urinalyses, which she has still not received despite countless requests. After undergoing a bone marrow aspiration it was clear that her body was not producing neutrophils, which are what fight everyday infections.

In fact, her body was actively destroying her neutrophils. This usually only occurs if someone has undergone chemotherapy, had an autoimmune response, or contracted HIV/AIDS. To date, these possibilities have been ruled out in the case of Ariana-Leilani.

Based on Ariana-Leilani’s medical records Dr. Karl H. Welte, Co-director of the Severe Chronic Neutropenia International Registry (SCNIR) believes her condition has likely been “induced by toxic agents”—meaning someone is purposely introducing harmful drugs into the child’s system.

Read more at: http://saveariana.tumblr.com/post/32892494388/saving-ariana-leilani

SAVING ARIANA-LEILANI

Learn More at: Innocense in Danger

About Severe Chronic Neutropenia

Out of concern for Ariana-Leilani, in January 2011 Dr. Dale wrote a  letter to the US State Department and the German Embassy urging that immediate action be taken to avoid unnecessary risk to Ariana-Leilani.    Dr. Dale is a co-director of the Severe Chronic Neutropenia International Registry, and an international leader in the field of diagnosis and treatment of this rare condition.   Dr. Dale has found there is a large misunderstanding of the medical community — leading to mistreatment and misdiagnosis.     The hidden dangers of SCN are explained in his January 2011 letter — namely, the “normal” symptoms of infection often do not appear and, thus, do not warn that fatal infection quickly spreading within the SCN sufferer’s body.

Here is a video produced by SCNIR to educate the medical community and others on this rare condition.

Neutrophils: Defenders from Infection from Audrey Anna Bolyard on Vimeo.

Dr. David C. Dale’s talk on Severe Chronic Neutropenia in February 2011 at the University of Washington.

Ariana-Leilani

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