----- Forwarded Message -----
From: Dr Ariel King To: "Maldari Michelle ( ES) <>; "David Landeryou (DCPS-OST)"" <>
Cc: Scott N Myers <>;
Sent: Wednesday, June 6, 2012 6:56 PM
Subject: Information - Untreated Severe Chronic Neutropenia for Ariana-Leilani King-Pfeiffer
Dear Nurse Harwood, Ms. Maldari and Mr. Landeryou,I write to you collectively to update you on Ariana-Leilani'suntreated (nupogen) very rare Severe Chronic Neutropeniawhich is life threatening. She can die of infection withoutthe normal signs of infection because she has a brokenimmune system with very few neutrophils to rally aresponse with a fever or redness.Prof. Dr. Karl Welte, the Number #1 world expert and founder of theonly medicine (G-CSF, aka nupogen) to treat Severe Chronic Neutropeniahas been intimately following Ariana-Leilani's case with all of her medicalrecords since birth. Dr. Scott N. Myers, knows of Prof. Dr Welte'sexpertise as the world expert on SCN and it treatment, and has writtenan article using data from the Severe Chronic Neutropenia InternationalRegistry, that Prof. Welte founded and reamins the Co-Director.In his February 2012 letter (attached) he states that Ariana-Leilani mustimmediately receive (G-CSF) "nupogen"the life-saving,immune-boosting medicine on a regular basis. The medicine is freeto her because she is on the Severe Chronic NeutropeniaInternational Registry. Yet, she is not getting this medicine.Untreated neutropenia with available medicine IS malpracticeon the part of Dr. Scott N. Myer (Dr. Myers last school informativenote was written in 2009, although it is not dated. It stated that the precaustionsfor SCN for Ariana-Leilani is to stay away from sick people and crouds).Both Dr. Myers and my husband and Ariana-Leielani's father, Michael Pfeifferknow clearly and have been warned numerous times that non-treatmentof Ariana-Leilani's severe Chronic Neutropenia will lead to death.Prof. Dr. Karl Welte's letter clearly states that if she does not get thisimmune boosting free medicine, then with time she will die from acommon infection, likely to be contracted from school. Prof. Dr.Dale in his letter 2011 (attached) states that "untreated SCN canlead to toxic, shock, loss of limb, or loss of life."Ariana-Leilani is severely immune compromised. There are precausionsthat should be followed where she is at school. Her desk andpens and personal items need to be wiped down and kept seperate, asthe nurse from the SCNIR said to Key staff last year. Ariana-Leilani islike your other students who are treated for childhood canceror organ transplant, and thus have a broken immune system,a very week immune system.Thus, it is even more important that you and all the KeyElementary staff are aware of her dietary restrictions(no salads, yogurt, lunch meet, ect.) and also the signsof infection, a low tempreture, rather than a fever, astomach ache, etc. A Severe Chronic NeutropeniaHandbook is attached for all the Key School Staff;the Arts/Drama School; After-school Starff, andDCPD Summer School Staff.Please feel free to contact either of the Co-Directorsof the Severe Chronic Neutropenia International Registry(SCNIR), Prof. Dr. Dale or Prof. Dr. Karl Welte or theclinical nurses that work with them for more information.Now that I have updated you on the information aboutAriana-Leilani's Severe Chronic Neutropenia at thistime, please make the necessary allowances and actionsto limit her possible exposure to common bacteria fromwhich she could die in less than 18 hours.I will continue to keep you informed and updated withinformation about Ariana-Leilani's very rare SevereChronic Neutropenia.The Independent Educational Program (IEP) that was reviewedand renewed for the 2012-2013 school year is listed under"other health" issues of Attention Defficit Hyperactive Disorder (ADHD),yet it fails to mention or take into account Ariana-Leilani's Severe Chronic Neutropenia.I am sure that this was just an oversight and will be promptly corrected.Thank you for incorporating this health information (SCN letters and handbook)into Ariana-Leilani's health records and formally making all the staff awareof her life-threatening health issues and how she needs to avoid common infections.Best regards,Ariel KingAriana-Leilani's Mommy and Protectorcc: Scott Nagel Myers, MD, MPH - Georgetown Lombardi Children's Cancer Center
Dr. Ariel R. King, MPH, MBA, PhD, DTM&H
Friends of Ariana Leilani, don't forget to sign her petition and ask your friends to do so.