An international campaign is underway to help save dual German – USA citizen 8 year old Ariana-Leilani. She currently lives in Washington DC faces unnecessary risk of death from the very rare untreated Severe Chronic Neutropenia’ a broken immune system that can be treated with the only medicine, “nupogen.” Since Ariana-Leilani’s illness is so rare, she is one of less than 1000 people worldwide on the Severe Chronic Neutropenia International Registry (based in Germany and the USA). Since she is on the SCNIR, she can receive the medicine for free, and also she has health insurance in both the USA and Germany.
The world experts have all agreed that while Ariana-Leilani will likely look healthy, untreated Severe Chronic Neutropenia can mask the early warning signs of fever and other signs of infection, leaving less than the 18 hours for an unnoticed deadly infection to clandestinely kill Ariani-Leilani, causing the “toxic shock, loss of limb or loss of life.”
The big question is:Since Ariana-Leilani is very sick and can die from her illness, yet there is a medicine to treat it that she can get for free, then why is she not getting the medicine and medical treatment that she needs?
For over 3 years Ariana-Leilani has been waiting for someone to stand up as assure that she does not die from a treatable disease. She is still not receiving the life saving medicine, nupogen or the full physical and psychological exams requested by the German Government.
Death from neglect – not receiving available medicine to avoid unnecessary fatal risk -- is unacceptable in the US. Hundreds of people from a 100 countries around the world support Ariana-Leilani’s right to live, expressed outrage and shock that no one in Washington DC the seat of world power is helping this very ill child.
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