T.B.’s Letter of Support for Ariana-Leilani to Get Life Saving G-CSF (Neupogen)

Ariana-Leilani

Ariana-Leilani has received many support letters from parents of children with Severe Chronic Neutropenia.   Here is one from T.B. who has suffered from severe chronic neutropenia, and has experienced first hand how some members of the medical community do not understand it and how to treat it:

To whom it may concern,

Hello, I am writing to you today about a young  girl who is suffering from severe chronic Neutropenia and is not receiving treatment for the condition. I too suffer from this condition. It is a life-altering condition to deal with as adult so I couldn’t imagine dealing with this as a child.

Ariana-Leilani desperately needs the necessary treatment to save her life.  Severe chronic Neutropenia is quite rare. Most doctors do not know how to treat it as I’ve witnessed with my own treatment. That’s why it’s even more important that Ariana-Leilani begin testing and treatment immediately.

I was diagnosed with the condition 10 years ago but I was not told by my doctor. I suffered for years with frequent infections, viruses and severe fatigue.  3 years ago I received the diagnosis again. And just 3 months ago I started Neupogen injections to boost my levels after the dropped below the critical level of 500 (when my body can no longer fend off bacteria & infections on it own).   What people fail to understand is that you can die from this condition if you’re not treated proactively and aggressively.  A cold or stomach virus could kill me. As an adult, I struggle from day to day to hold down a full-time job while dealing with this disease.

Now imagine being an 8-year-old child with Neutropenia and your treatment is being blocked.  It’s like sending a child into a classroom where other students are eating peanuts.  That child would likely have a severe reaction or even lose his/her life. That’s the same issue Ariana-Leilani faces every day. Simply going outside to play, getting a cut, or having a friend cough near her could kill her.  These issues would no longer be life-threatening if she was being treat with Neupogen, which can be provided free of charge.

 Neupogen is a drug that jump-starts the bone marrow to produce neutrophils.  Though sometimes painful, the pain can be managed with simple allergy medication. And it’s worth the trade if it means Ariana-Leilani can grow up much like normal children. So that she can play, run, give her best friend hugs, and share secrets like all little girls do.

There has been mention of Neupogen being linked to cancer. If this is the reason this child is not receiving Neupogen, then that decision needs to be reconsidered. Recent studies have shown no link between Neupogen and Cancers.

I have been on the shots for about 3 months now. I see a world of difference, as does my family. I have more energy to function as a normal person. I no longer have to take naps on my lunch break, and I don’t have to worry about sanitizing everything touched by others. Please consider carefully what denying this drug could mean for Arian-Leilani. It could be a death sentence; one that could be avoided by beginning injections.  Thanks for your time and consideration. I am willing to answer any questions you may have if it will help this child have a  semi-normal upbringing not plagued by sanitizers, masks, isolation from other children and numerous visits to the doctor’s office.

Sincerely,

T.B.

Louisville, KY

GoPetition

(click to sign the petition)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s