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Trendsetters to Trendsetters Magazine believes in supporting all types of disease research and charities that need funding and public awareness

. Several of these illnesses are recognized in September and Sickle Cell Anemia awareness is the one this article will focus on through one mother’s testimony. She shares that not only did she choose to save the life of her youngest daughter, but that choice meant accepting an unexpected diagnosis that would present some challenges in the long run to sustain her daughter’s life. Thousands of women are faced with difficult decisions that could alter their life but when God steps in and offer His solution, the outcome could be part of a test for a greater TESTimony! This story is nearer and dearer to my heart and one that I was always in fear of as a one in four chance my daughter could one day face.

     After my daughter Hatiara was born in January of 1993 (I named her after my mother Hattie), I received the news in a visit from a State agency that she was a sickle cell trait carrier. They explained all the scenarios that could happen with her as a trait carrier and what could happen, if in her adult life, she had children with another trait carrier. I made it a point to research everything I could, even doing a paper on the disease when I went back to college. When Hatiara or “Tia” as she is most known for…got old enough to understand, I explained to her that she was a sickle cell trait carrier and what that meant, by then I was well educated on it. As a little girl she had periodic spurts of joint pain in her knees. I took her to see her pediatrician who explained that sometimes children who are sickle cell trait carriers can have some joint pain, but she would grow out of it. And she did. Yet, I made it a point to educate her, so she’d know she had to be careful of who she conceived children with, so she did not have a child with sickle cell. However, our fears came true and now it’s time for HerStory to make a difference in someone’s life.

     “I grew up in a small town called Monroeville, Alabama”. I was raised by my mother and stepfather. They gave me and my siblings a pretty good upbringing. Times got hard sometimes, but they always made a way for us. I appreciate them more than they know. I don’t remember much about the joint pain, but I remember not liking to go to the doctor. After high school, I had my first daughter Zalayvia in January 2012 in an emergency cesarean because of preeclampsia. Her father Wesley Jones was present at her birth and that was comforting and encouraging when it became determined that I was going to have an emergency C-section. I was a first-time mom and that was scary within itself, but at least I wasn’t alone. I believed he would always be there for her. My mom told me after Zalayvia was born that when the nurse opened the curtains to the nursery, she saw Zalayvia’s dad looking down at her with such a loving glance that it eased all her fears of the father he would be for her granddaughter. He stood about 6’ 8” tall, so when he held her it was like a giant holding a baby. He stayed the entire time and helped me out with her as I rested. He went off later to play ball and unfortunately, after returning to Alabama from California playing semi-pro basketball, he was shot and died three weeks later from complications.

     I moved to Montgomery, Alabama with the hopes of beginning a new life and started my Associate of Science degree online at Ultimate Medical Academy in Health Science with a concentration in Medical Office Administration. During this time, I became pregnant with my second daughter Zamora. Her birth in September 2014 was also complicated. The doctor and her team were nothing short of amazing. I wanted to have a VBAC (vaginal birth after caesarean) and it would have been easier if my daughter was not as large. I had gestational diabetes and it made her gain weight more, so they had to use forceps and a nurse standing over my head on the bed pushing and one pushing from the side to get her out. The NICU (neonatal intensive care unit) was on hand because she came out not breathing, but God intervened, and I was able to hear my baby’s first cries for life. Her dad was in the room with both our mothers and I just remember wanting to hold her. Later, I would finish my degree and start a new job at a doctor’s office.

When I found out I was pregnant with my third child, I was put through the pressure of ending the pregnancy because I had two children already. I told the person that I didn’t want to do that and yet I was feeling coerced into ending a life just because I was experiencing financial difficulty. I prayed a lot of nights and even talked to my mom about it. She shared with me a similar experience she had and told me she regretted doing so. Her message to me was, ‘Never let a man dictate to you what to do to your body. God will make a way.’ After being given the money to carry this horrific act out I went to Florida on a journey that would change my life. I remember me and my mom crying over this decision and me telling her what I was told to do and why. That morning, we headed to the clinic and there were people outside of it protesting and praying. I could see the tears streaming down my mom’s face pleading with me not to go through with it. I think she could see that I really didn’t want to do it, but I wasn’t sure how I was going to take care of three children by myself. Because that would be the alternative to me choosing not to listen to him. I remember looking into the rearview mirror at the people who said they wanted to talk to me. As something urged me to get out of the car, I could see the concern in my mother’s eyes and yet I saw hope. When I got to the people I found out that they were a part of a ministry that wanted to provide solutions to women faced with this dilemma of not feeling they had a viable alternative. I remember just crying and praying inside for God to reveal to me my destiny or confirm what my mother was telling me God wanted to do. Mrs. Chepita, Mrs. Mary Beth and her husband Mr. Ernie all walked up to me as I got closer to them and embraced me then prayed over me. They were participating in the “40 Days of Life” prayer vigil that Spring of 2016, a campaign-based community organization that did peaceful demonstrations to eradicate abortion. Afterwards, they asked me why I felt like I had to make this decision and I explained what was going on in my life. They told me that if I chose life, they would help me get through it by helping to remove the obstacles I would face alone, and they wanted to pray my strength to stand up for myself in defense of choosing life, to the person who was encouraging me to make this decision. By that time, my mother walked over and we all cried and began the strategy on a road that would change my life. They were strangers who later became family.

     I feel the need to share MY truths about the birth of each of my children and my dilemma of being forced, at that time, into destroying a life that needed me. I believe many women suffer in silence with telling their truths for fear of what other people would say or think about them or even getting mad at them. I learned a long time ago…your truth is just that…yours. No one can live it for you…no one can take them away from you, they may try to scare you into keeping them hidden but the Bible teaches us that what’s done in the dark will come to light. Therefore, I chose to tell my own story. My mother always said that her children were destined for greatness and would have to one day help other with our testimonies.

     Now back to the matter at hand, long story short, I went through with my pregnancy not knowing what God was about to do in my life with this little bundle of joy, but God did. My mom actually told me when I was pregnant with my daughter, to do my research on sickle cell disease. She wanted me to start a foundation because of me being a trait carrier and I remember telling her, ‘Mom why do I need to start a foundation when I don’t have the full-blown disease?’ Why would I even be worried, her father never said he had the trait. Not realizing, soon I’d need that information. I know now that it was God allowing her to tell me so that I could prepare. The Emerald Coast Coalition for Life threw me a baby shower right before my baby was born in September 2016. I felt so loved and celebrated with people that didn’t know me. Wondering how I would be able to purchase things for my child was eliminated. The day Zyliee was born, it was a relatively easy birth. I stayed in labor long enough for my mother to drive from Pensacola, Florida. About thirty minutes after she got there, my daughter was born. Her dad was there and we all relished in the moment. Funny how life can happen. The moment I looked into her beautiful little eyes, as I had done with my two other daughters, life’s difficulties dispelled from me. Yet, I wasn’t prepared for what would come next. I got a letter that the results for Zyliee were back and her pediatrician wanted to see her and do more tests. When the results were in a few weeks later, the doctor told me several things. First, they said what she would face growing up and what I needed to do to make her life a little easier to bear with the pain. They said, she could have damaged kidneys because having sickle cell makes it difficult to hold onto fluid. Children with sickle cell need to drink more fluids to prevent dehydration because they can’t concentrate urine. They also need to go to the bathroom more often. They told me if she ever has a fever of 101-degrees Fahrenheit or higher, I need to take her to the hospital immediately because it could be a sign of infection and infections in sickle cell patients can be critical. It’s much harder for their bodies to fight off infections. I still trusted God to take care of my baby. My prayer to God was, ‘Lord please allow Zyliee to live a normal life like her sisters although she has this disease. CONFUSE the doctors Lord. Don’t allow her to deal with as much pain. Show them that you are God all by yourself, and you can work miracles on your children’s behalf.’   My God indeed answered my prayers thus far.

     Knowing that Zyliee has sickle cell has affected my life tremendously because I’m constantly worrying whether or not she will have a crisis and if she does…when? It scares me to know what she could possibly face, but the God I serve has never failed me. I gave it to Him when I first found out about it and I left it there ever since. I remember crying for weeks hoping and praying they would tell me it was a mistake. I held her in my arms while crying and praying over her. I didn’t want to face reality. I knew all of the things she could possibly go through with this disease and it had me distraught the first few weeks of her life, but I had to get it together and be strong for her.

     It's been a challenge raising Zyliee with my two other daughters because I have to take her to the doctor more often than I do her sisters. She has regular checkups and she has to see her Hematologist. I am grateful that I am in the medical field, it helps understanding her condition. I moved back to my hometown and had a job at the local hospital. It helped knowing that I was familiar with the medical team that may one day tend to my daughter. I have watched her sisters become so protective of her. They know that she has an illness that could hurt her, and they are careful to attend to her. Their relationship is so amazing. I always wanted sisters and the fact that I have all girls and I am able to see their bond grow, I sometimes see what I missed out on. Sisters are your first best friends. Although Zalayvia and Zamora are protective of their little sister, sometimes she acts like she’s the boss of them. They still love her unequivocally and their bond is unbreakable. In a recent visit to her Hematologist, I received the good news after they checked her blood that they couldn’t understand why she hasn’t had any issues thus far. They were confused at her results because most babies with her disease would have had a crisis by now and yet, I am thankful that she hasn’t. Her doctor said her numbers were great and there’s a possibility that she won’t deal with the many complications growing up as they had expected. See, she was diagnosed with Hereditary Persistence of Fetal Hemoglobin (HPFH). It is an unusual condition in which the red blood cells contain greater than normal amounts of hemoglobin F (fetal hemoglobin). About one in a thousand African Americans have the HPFH carrier (trait) condition, compared with about 1 in 12 who have sickle cell trait. The gene for HPFH is passed down from parent to child just like hair and eye color. HPFH cannot be identified with a blood test done at birth because the newborn baby normally has a large amount of hemoglobin F. In most children, hemoglobin F decreases and is replaced with hemoglobin F throughout their lives. It protects them from dealing with excruciating pain and strokes throughout life. My dreams for my children are for them to exceed beyond my expectations. I want them to be successful at whatever they choose to do in life. More than anything I want them to be happy and gain independence as well as confidence to be all they can be. The sky is the limit and with God on their side I know they will prosper in whatever their heart desires. My oldest daughter deals with the fact her father is no longer here. He died when she was only 7 months old and the older she gets the more she longs for his presence in her life. I have so many unanswered questions to answer. She always asks me why everyone else is lucky to have a daddy and she doesn’t. She has to watch my last two babies interact with their father while she has to deal with her father not being here. He will never see her walk in her class on the first day of school, take her to the park, walk her down the aisle one day for marriage, and just experience precious moments in life with her. Although it’s challenging for Zalayvia to deal with on a daily basis, she’s a very strong little girl and he will forever live through her because she is his twin. Zamora is the middle child, her sisters each have situations that have happened beyond their control and she sees them get attention from the aspects of what each of them need from me. However, I make sure that she is not lacking in her life as well. It takes a lot to balance all of this…but I learned from my mom, I must determine what works for me and my children and do that.

     My message to parents who may be dealing with either of the scenarios that I dealt with in my life is simply this. First, they need to trust in God like never before. It will get better if you hold on to His unchanging hand. No matter what the doctors might say…you must believe that the Lord will move mountains for you and heal your child, if you have faith. The most important thing to do is to take heed to instructions on how to create a healthier life for your child so that he or she will not have to deal with certain things unnecessarily. They need to keep their child hydrated pushing fluids constantly and make sure to administer all medications prescribed by the doctor. Finally, a well-balanced diet helps tremendously.

       Dealing with a child that has sickle cell anemia will have its challenges. Emotional and physical depending upon what your child is facing. For me, my strength comes from a serenity prayer and I’d like to leave it with you: ‘God grant me the serenity to accept the things I cannot change; courage to change the things that I can; and wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardships will be my pathway to peace…taking, as Jesus did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to His Will; that I may be reasonably happy in this life and supremely happy with Him forever in the next. Amen.’

     Going through this ordeal has made me realize that there are other parents out there like me who need assistance, guidance, and awareness of the things that will help their child with the sickle cell disease lead as normal a life as he or she can. I am launching a foundation in the name of my daughter who has embraced life in such a short time. She is a very strong little girl and you would never think she has a deficiency. Amazingly, she turned two years old on the 23rd of September. The month that brings about awareness and research for Sickle Cell Anemia. Her foundation will provide education awareness, resources, community events, screenings and more for the parents and children in need of our programs.

   You can follow the launch and the foundation on our FaceBook page: @ZylieesChildrenFoundation. Please consider becoming a partner, donating, and ensuring the life of a child is a little better because of you. Special thanks to God, Mr. Ernie and Mrs. Mary Beth, Mrs. Chipeta, and my mom for giving me the strength to make the best decision for me and my family. I didn’t know choosing to save my daughter’s life…meant facing challenges with a disease that could take her life. But I would do it all over again and I wouldn’t change a thing. Get tested to see if you have any of the Sickle Cell traits.

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