A Letter of Support by G. and T. L. for Ariana-Leilani

Please help save Ariana-Leilani’s life by forcing her father and doctor to treat her with G-CSF injections.

It’s August 2012. When my son was 17 months old, in August of 2011, we learned he has neutropenia. We learned that the bacterial infections in his ears and skin had been just shy of taking his life. We learned that just a few thousand people in the world have the condition. When you hear that a condition is so rare – your first thought is that there is no hope. There isn’t going to be a medicine; there isn’t going to be a cure.

The wave of relief came when we learned about G-CSF. Our pediatric hematologists at the Cleveland Clinic acted with urgency. Our 17 month old son was on G-CSF within six days of discovering his neutropenic state. Although the idea of giving my son a shot everyday made me nauseous, I wanted to be the one to give him his first shot. Because that’s what a parent does for their child.

The idea of not giving our child G-CSF NEVER crossed our minds. I would do anything to keep my child alive. I would do anything to keep my child from slipping back into a state of listlessness over a common ear infection or a low grade fever. No parent in his or her right mind would hear that their child is in an extreme risk of bacterial infection and deny a lifesaving medicine.

Neupogen saved my son’s life. It also improved his quality of life. Before Neupogen, he was sick so frequently that he never went a full 10 days of an antibiotic ending before the low-grade fever and an ear or skin infection appeared.

We had a pediatrician ignore our son’s signs of Neuropenia for 17 months. Out of laziness, she risked my son’s life. She never ran a blood test to know he was neutropenic. There are no words to describe the anger I feel when I think about her. After nearly a year, that anger faded from the forefront of my mind … until I learned about Ariana-Leliani’s father and doctor refusing to treat her neutropenia. If fact, I feel a stronger sense of anger towards this situation because Ariana-Lelaini isn’t in danger because of stupidity or laziness. This is criminal. She is in danger because of her father’s decision. One that isn’t even supported by her mother.

In the Neutropenia community we talk about being advocates. My friends with neutropenic children – or adults who are neutropenic – deal with hematologists that don’t understand Neutropenia, and those people find new doctors that will pay attention and treat our children according to the guidelines of the Severe Chronic Neutropenia Internation Registry (SCNIR).

Ariana-Lelaini’s father is not being her advocate. I cannot fathom how any parent would do this to a child.

Regards,

G. and T. L.

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