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Suffering from Neutropenia, Oliver Makes a Wish

Like Ariana-Leilani, Oliver Bayliss of the UK has a rare blood disorder.   Suffering from Severe Neutropenia condition meant that he was susceptible to infections as his blood was deficient in white blood cells and unable to fight bacteria.  It is quite a rare condition and his parents, Paul and Sharon Bayliss, only know of two other families in the UK that have similar problems.

Read More: Oliver Makes a Wish 

GoPetition

Please sign the petition to save Ariana-Leilani today!

 

Amgen’s Neulasta One of the Top Selling Drugs

Medscape News published a list of the top selling drugs in the United States based on a list produced by IMS Health.   Amgen’s Neulasta, a long acting form of neupogen for the treatment of neutropenia (the treatment denied but needed by Ariana-Leilani), made tenth place at $3.6 billion in annual sales.   Read more at Medscape

ORPHAN DRUG AND NORD SAVED THEIR SON’S LIFE

The Millers’ three-year-old son, Evan, exhibited frequent symptoms of distress.  “People kept telling us he was just a cranky, colicky baby,” says Amanda.  At 12 weeks of age, Evan abruptly stopped taking any food and screamed when anyone touched his abdomen.  In the emergency room, it was determined that Evan had fluid in his abdomen and low blood sugar.  His blood wasn’t clotting and his kidneys and spleen were enlarged.  Most alarming, there were signs of liver failure.

The Children’s Hospital of Philadelphia diagnosed the condition as  tyrosinemia type 1, which is a rare metabolic disease.

The orphan drug Orfadin® was approved by FDA in 2002.  However, because Jon is self-employed as an auto mechanic, the family did not have insurance that would cover the cost of the drug.   Jon connected online with another parent who told him about NORD and its Patient Assistance Programs, which help patients obtain needed medications.  While other organizations and companies provide PAPs for medications today, NORD was the first to do so.

NORD partners with Rare Disease Therapeutics on a PAP for Orfadin®.  When Jon Miller called to inquire about that program, he spoke to Michelle Mortara, a patient assistance specialist.  NORD, the specialty pharmacy, and the company providing the drug.

Within one day, the medication arrived at the hospital, and little Evan and his parents were soon on their way home.  Today, Evan attends pre-school and “does all the things three-year-olds like to do,” his mother says.

Have Ariana-leilani have the same benefit of a cure.  Please Sign the petition to help save Ariana-Leilani.

GoPetition for ariana-leilani

Read More:

Read More: http://rarediseases.org/about/millers-story

Obama Speaks Out On Human Rights: It is Time to Defend Ariana-Leilani’s Rights, too.

English: President Barack Obama shares a momen...

In an interview on the Jay Leno show, President Obama stated:

Well, I’ve been very clear that when it comes to universal rights, when it comes to people’s basic freedoms, that whether you are discriminating on the basis of race, religion, gender or sexual orientation, you are violating the basic morality that I think should transcend every country.  And I have no patience for countries that try to treat gays or lesbians or transgender persons in ways that intimidate them or are harmful to them.

Doesn’t 10 Year Old Ariana-Leilani, who lives in Washington DC’s Ward 3, have a right to life saving medical care?   Stop the discrimination against Ariana-Leilani.  Let’s stop the violation of her rights.

Read more: President Obama on Leno Show

Talia Joy Castellano Dead: Inspirational YouTube Child Star Dies After 6-Year Battle With Cancer

We regret to announce that Talia Joy Castellano lost her battle to cancer yesterday.  “The bubbly girl who wanted to do something about childhood cancer.”   #‎prayfortalia Talia is 13, a little older than Ariana-Leilani.   They both became sick at about the same age.  In September, Ellen DeGeneres invited the Florida native to appear on her show and revealed that Talia had been chosen to be an honorary CoverGirl.

As Talia says, there should be so many other people helping people.   There is still time to help Ariana-Leilani who suffers from untreated Severe Chronic Neutropenia in Washington DC.   Please sign her petition today:

GoPetition

Question of the Day: Is a Medical Experiment on Ariana-Leilani a Matter of “National Security?”

Graph Showing Worsening Neutropenia Condition of Ariana-Leilani

Worsening Neutropenia Condition of Ariana-Leilani

By all indications, the failure of the USA to 10 year old Ariana-Leilani’s Severe Chronic Neutropenia with the life saving neupogen medicine she needs to boost her critically low ANC to protect her from potentially fatal infection has all the trappings of the medical experiments that hospitals like Medstar Georgetown University Hospital have conducted for the CIA in the past in the name of “National Security.”    Her ANC’s (the measure of her resistance to infection)  continue to be severely low (see graph), yet after five years no toxicology tests have been done to eliminate its cause, and Medstar Georgetown University Hospital continues to engage in this apparent medical “experiment” placing Ariana-Leilani at risk of fatal infection.

Seal of the C.I.A. - Central Intelligence Agen...The recent revelations of the USA’s collection of massive amounts of personal data on its own USA citizens using the FISA court and PRISM programs, in violation of the US Constitution’s right to privacy, and President Obama’s proclamation  today that this wholesale invasion of privacy is “legal” — despite direct conflict with the right to privacy in the USA are very disturbing.

Ariana-Leilani and Willi King

Ariana-Leilani and Willi King

Is this medical experiment by these DC based CIA affiliated institutions also being allowed as a matter of “national security” like the Tuskegee and MK-ULTRA experiments of the past?   Voice your outrage.   Sign the petition to save Ariana-Leilani.

Sign the petition to Save Ariana-Leilani: 

GoPetition

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

Inspirational 10 Year Old, “Live Like Bella,” Loses 6 year Fight to Cancer

Live Like Bella 10 Year Old Loses Fight to Cancer

Live Like Bella 10 Year Old Loses Fight to Cancer

Bella Rodriguez-Torres died after a 6-year battle with rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to bones.   When she was first diagnosed stage IV cancer at 4 years old, doctors only gave Bella four months to live. She surprisingly recovered, and started to walk on her own two feet and the tumors soon disappeared. However, the cancer returned throughout her life, necessitating numerous rounds of chemotherapy, radiation and surgery. She still didn’t give up.

Supporters of Bella began to “Live Llke Bella,” a motto for pursuing everything that life has to offer.
“Live Like Bella means to eat something and enjoy it, savor it, go play with gusto, even the simple things. Do them and enjoy them. Learn something new, get out of your comfort zone and enjoy life,” Ralph explained.

LeBron James adopted the motto. He and his teammate Dwyane Wade wrote the slogan on their shoes before the Miami Heat’s game against the Indiana Pacers on Tuesday.

Live like Bella, please sign 10 year old Ariana-Leilani’s Petition to get needed medicine and medical care for her life-threatening Severe Chronic Neutropenia:

GoPetition

Study Looks At Genetic Basis of Neutropenia

A new paper by S Gautam, S Kirschnek, I E Gentle, C Kopiniok, P Henneke, H Häcker, L Malleret, A Belaaouaj and G Häcker:

Differentiation of neutrophil granulocytes (neutrophils) occurs through several steps in the bone marrow and requires a coordinate regulation of factors determining survival and lineage-specific development. A number of genes are known whose deficiency disrupts neutrophil generation in humans and in mice. One of the proteins encoded by these genes, glucose-6-phosphatase-β (G6PC3), is involved in glucose metabolism. G6PC3 deficiency causes neutropenia in humans and in mice, linked to enhanced apoptosis and ER stress. We used a model of conditional Hoxb8 expression to test molecular and functional differentiation as well as survival defects in neutrophils from G6PC3−/− mice. 

Read More: Cell Death and Differentiation

Clouds by Zach Sobiech

Inspirational cancer victim Zach Sobiech, sings his original infectious song about his unfortunate circumstances with over 4 million youtube views.  He recently lost his battle to cancer.  Let’s keep fighting so no children will lose their lives to cancer and other childhood illnesses.  He is an inspiration to all children.  Worth a listen:

Read more: Teen who penned moving farewell song ‘Clouds’ loses battle with cancer