Ever Heard of Cyclic Neutropenia? Neither had I. Until…

(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 cbarrett82@att.net ! 
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.

Laissez Les Bons Temps Rouler Four Days Late? What Say You?

By now, just about everyone knows that the Krewe of Toulouse Mardi Gras Parade that was scheduled for this past Saturday was canceled because of the possibility of inclement weather. I understand the effect that winter storms have on those of us who call Alabama home. Bread? Check. Milk? Check. Cancel school? Check. Gas up the Bondo/primer Camaro and bring on the snow? Check. Even though it appeared pretty certain that by noon on Saturday temperatures would be well above the freezing mark, I must defer to local officials who apparently made the decision to cancel the parade based on the facts as they saw them at the time. Hindsight is, after all, 20/20. That did not keep my son from opining numerous times during the day and into the evening on Saturday that it would have been a great day for a parade. Third-grader’s opinions notwithstanding, however, it didn’t happen.

My question is why isn’t the parade going to be rescheduled? With as much difficulty as Wetumpka has had lately with following through on planned events, for good reason I would add, such as Christmas on the Coosa Festivities and the progressive nativity, it would seem that the city would want to be as accommodating as possible in working with the KOT to make this parade happen. I’m sure the many people I saw walking the sidewalks in Wetumpka at noon on Saturday, some who were not Wetumpka residents who had come for the parade not knowing it had been canceled, would like to see the parade happen.
Why have a Mardi Gras parade after Fat Tuesday has already passed? Because a lot of people did a lot of work to give the residents of Wetumpka and surrounding communities a family-friendly, fun event to be a part of and I think only the purest of purists would not be in favor of having the parade the Saturday after Fat Tuesday. I’m familiar with Ash Wednesday and Lent and the traditions upon which Mardi Gras was founded both here in America and abroad. I also know that there were a whole bunch of people, both aware and unaware of the cancellation, who were very disappointed that we had a beautiful day for a parade and yet the parade didn’t show up for the fun. If I were a betting man, I’d be willing to bet that that vast majority of those people wouldn’t mind at all having a Mardi Gras parade after Mardi Gras. Heck, you don’t even have to call it a Mardi Gras parade. Call it the “Come Out and Get a Bunch of Beads and Moonpies Parade” or maybe the “Saturday After Fat Tuesday Parade.” Just call it a parade and reschedule it. It’ll be fun and good publicity for the city of Wetumpka which would have the unique distinction of having a post-Mardi Gras, Mardi Gras parade! I know there are difficulties logistically with rescheduling an event such as this but I’m certain the citizens of Wetumpka would be more than appreciative of both city officials and the KOT for going the extra mile so that the show can go on. I know the Hankins family would! Especially the eight year old boy and the three year old girl who looked forward to the fun all week long.
Oh, well. It’s not for me to say and as usual, this is just my opinion. I could be wrong. But as for me and my house we say with all the fervor we can muster: LAISSEZ LES BONS TEMPS ROULER FOUR DAYS LATE! Hope to see you at what I hope is a parade soon!

Milton McGregor Purchases Glass House in Macon County

Milton McGregor said yesterday that Governor Bob Riley and John Tyson, the head of the Governor’s Task Force on Illegal Gambling, “are acting like a bunch of third world thugs.” That’s rich. Ousted and disgraced  Birmingham Mayor, Larry Langford won 521 jackpots between 2006 and 2008 totaling more than 1.5 million dollars at McGregor’s currently shuttered Victoryland casino. According to a witness, one August day Mr. Langford was apparently escorted to specific machines by a casino employee. The witness alleges that while she won nothing that day, Mr. Langford left with somewhere in the neighborhood of 50k dollars in his pocket. Coincidence? Mr. McGregor would have us believe just that.  If Riley and Tyson are third world thugs then uncle Milty certainly must be the real world embodiment of Tony Soprano.

If there is any profession that breeds more corruption than politics(with apologies to my office-holding acquaintances) it would likely be the career of gambling magnate. So, even if Gov. Riley and Mr. Tyson have been involved in some manner of shady dealings it would stand to reason that Mr. McGregor has likely been involved in more. Take that for what it’s worth but the plethora of movies involving crooked casino bosses can’t all be total fiction can they?

Consider that what Mr. McGregor peddles to the unfortunately gullible masses is dreams of wealth and luxury that in reality usually end up as empty gas tanks and unpaid utility bills. Promises such as this beget greed and greed begets corruption. I’ll let you use your power of deductive reasoning to figure out the rest of this equation but it ain’t exactly rocket surgery.

Seems as though I remember some old adage about what occurs when you point your finger at someone else. Maybe I just made that up, I’m not sure. Nevertheless, I hope the glass that Mr. McGregor’s house is made of is of the tempered variety. Those stones are awfully big.

Laissez Les Bons Temps Rouler! Come to the Mardi Party!

I wanted to take just a minute to remind everyone of the Mardi Gras parade in downtown Wetumpka this Saturday beginning at noon. Last year the crowd was several people deep along the route as the beads and Moon Pies flew. Show up early and stake out your spot as the crowds this year promise to be even bigger than last. There will be floats, costumes, music, and beads and Moon Pies galore!

Keep in mind that this isn’t New Orleans and this Mardi Gras parade is fun for the whole family. My kids had a blast last year and have been looking forward to this year’s parade for weeks now. Shannon Fontaine and the Krewe of Toulouse have done a great job organizing and putting on this great event right here in Wetumpka. Come downtown and have a great time with the rest of the city this Saturday beginning at noon! You’ll be glad you did!

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