In a twenty-four-hour period, the average person’s bone marrow will spit out a hundred billion microscopic troopers.
These neutrophils spend their short lives on a suicide mission to save their host from invasive bacterium. The most abundant cell type in the human body, neutrophils, serve as the first line of defense against hostile microbes. It is estimated that one or two in a million children are born without the catalyst that rouses the bone marrow to dispatch these vital fighter cells—my daughter was among that rare group.
If it hadn’t been for the devoted doctors who cared for her with love and high-octane IV antibiotics, Leta most likely would have died in childhood from one of her many severe infections. She suffered multiple pneumonias, a liver abscess, skin lesions, endless fevers and chronic mouth sores. Thanks to the wonder of modern medicine, an epic new drug called G-CSF spurred her bone marrow to life when she was twelve years old. Two injections a day diminished the occurrence and severity of her infections.
Crawling Neutrophil Chasing a Bacterium:
This video is taken from a 16-mm movie made in the 1950s by the late David Rogers at Vanderbilt University.
When she was twenty, Leta was diagnosed with Acute Myelocytic Leukemia. She died four months later from a failed bone marrow transplant. Two years after she died, I joined with several parents and patients to organize a support group for people with neutropenia, the National Neutropenia Network (NNN). Serving as the executive director, I, along with a group of dedicated volunteers, produced an annual conference where patients share their stories with each other and meet with the world’s top bone marrow failure specialists.
As a child Leta often felt isolated and alone, wishing she could meet someone who understood the challenges of her life. It was a bittersweet moment when I first witnessed two children with Leta’s diagnosis walking hand in hand at Neutropenia Kids Kamp.
Ten years after I began my tenure at the Network, I found the courage to settle down and write Leta’s story. Today, the organization flourishes under new leadership. If you or anyone you know suffers from neutropenia, there’s a place for you!
Learn more about the National Neutropenia Network: https://neutropenianet.org/
You can also read about about the outstanding research conducted by Severe Chronic International Registry here.