(Emily is the first picture, Joeli is the second)
First… a BIG thank you to my Uncle Thad for letting me post on his blog! Please forgive and try to overlook imperfections and rambling as I am not used to posting like this.
If you don’t know me or my family, here’s a little intro… My name is Courtney. My husband, Dale, and I have been married for 9 years this May. God has blessed us with two beautiful children. Stephen is 7 years old, loves baseball and is absolutely a momma’s boy! Emily is 3 years old, a girly girl with attitude and is in love with her Daddy and “Bubby”! We love the Lord and are very thankful for the things that He has done and is doing in our lives in good times and in bad.
If you do know us, you also know that we have struggled greatly with Emily’s health. In October of 2007, Emily suddenly spiked a fever of 106.3 degrees and it would not break. She became lethargic so we took her to Baptist South where her pediatrician met us at 11:30 that night. She immediately began giving her intravenous fluids and took her across the hall for a Lumbar Puncture (spinal tap) along with other blood work. Meanwhile, Dale, my mother and I were holding hands in room 551 of the pediatric unit at Baptist South as we gathered around an empty baby bed in prayer. Emily was just across the hall in the treatment room and the cry that we heard was absolutely heart breaking. I have never, in my life, felt more alone and scared. Once she was returned to our arms, our time there became a waiting game. The normal blood work returned with abnormal results, but really still didn’t tell us anything. We would have to wait 48-72 hours for the culture results from the lumbar puncture to be final. Still at the hospital on day three… still with extremely high fevers… still no answers… we received a phone call from the doctor saying that the culture was complete and Emily did in fact have Viral Meningitis. As a parent, just the word “meningitis” is devastating to hear. We were told that “if you have to have Meningitis, you want Viral and not Bacterial” and I assure you that was not much comfort at all. After 7 days, Emily (with the arms of Jesus wrapped tightly around her) was able to go home to continue recovering from this terrible virus that attacked her little body.
After about 21 days, Emily began to run another high fever. We, then, began to see a pattern of extremely high fevers every 21-28 days. Sometimes they came with other symptoms and sometimes they didn’t. Our sweet little baby endured two more lumbar punctures, many series of tests, so forth and so on for about 14 months. She had 8 lengthy stays at Baptist South and 3 at Children’s Hospital in Birmingham during that time. The nurses got to know her and she became what they called a “frequent flyer” there at Baptist South. Emily was sent to an Infectious Disease specialist at Children’s who took lots of time with me one day explaining the possibilities and options. He referred us to a Pediatric Immunologist there at Children’s in Birmingham and we finally began to feel like we were getting somewhere. There was a series of 4 tests that required taking blood and sending it to Baltimore. He explained that the tests were most likely not covered by insurance and they would be at least $1,000.00 each. Whew! We went on with the tests, though, because we had no other hope of finding out what was going on with our baby girl. They did one test at a time so it took about 4 months to get all of the results.
I received a call from Children’s Hospital one day about a year ago saying that Emily had been diagnosed with Cyclic Neutropenia. The process of getting a diagnosis was extremely long and frustrating. Come to find out, her CN was caused by the Viral Meningitis that she had at 10 months old.
Cyclic Neutropenia is one of the rarest forms of Neutropenia with an incidence of one per million. It is usualy caused by the ELA2 gene. 10%, though, do not carry the gene. CN affects the production of neutrophils in the white blood cell count. Neutrophils are the type of white blood cell that attacks bacteria in the blood. Since Emily’s diagnosis, I have researched and talked with doctors anytime I have the chance, but have never actually met anyone living with Cyclic Neutropenia.
Just yesterday, as I was researching and studying, I found a Facebook group for parents of children with Cyclic Neutropenia or for adults that have this type of Neutropenia. Through this group, I found a family right here in Alabama that has been affected by CN in a major way. Chad and Brittany are the parents of three beautiful girls. Joeli was their first and she left this earth after 3.5 short years, she would have been 7 this year and Brittany has shared with me that they take comfort in knowing that she is in the lap of our Father in Heaven. Brelan is their middle daughter and is 3.5 years old. Mileigh is the baby and she is 1.5 years. They live in Mobile and have a photography business called All Heart Photography. Visit them at http://www.allheartphotography.com when you have a minute and read “Joeli’s Song”. On January 18, 2007 Joeli developed a massive bacterial infection that her little body just couldn’t handle. Joeli had Cyclic Neutropenia and lost her life due to her neutrophils being too low to fight the infection. Brittany and Mileigh also have CN and in their cases it is hereditary. Chad and Brittany have started a fundraiser to help raise money and awareness for the NNN (National Neutropenia Network) and the SCNIR (Severe Chronic Neutropenia International Registry) where they have customized bracelets in honor and in memory of Joeli.
Dale and I would like to soon place an order for these bracelets to do our part in helping raise money and awareness for and about Cyclic Neutropenia so other people don’t have to go through what Chad and Brittany are still living through. We would love to have your support by ordering a bracelet if you are able and would like to do so. Each bracelet is $5.00 and all of the proceeds benefit the NNN (National Neutropenia Network). They work hand in hand with the SCNIR (Severe Chronic Neutropenia International Registry). If you’d like to join us in this order, please let me know by contacting me via Facebook or email me at firstname.lastname@example.org !
I have attached pictures of Joeli, Emily and the Cyclic Neutropenia Awareness bracelets to this post so you can see the beautiful faces that CN can be behind and the bracelets that are making a difference in their lives.