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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