Skylar’s Story
Hello, everyone. I am Skyla Alexia Stewart, and I want to share my journey with you. From the very start, my life has been intertwined with Sickle Cell Anemia. Born in Georgia, USA, I was tested for this condition shortly after my birth, and the results came in a few weeks later. It was a moment that marked the beginning of my family’s unique journey with this condition, as my mom was already dealing with my older brother Sean’s Sickle Cell journey.
Although I’m just four years old, my path has been far from easy. Unlike my brother, I haven’t experienced hospitalizations, but over the last couple of years, my Sickle Cell disease has become increasingly active. I’ve had to face excruciating pain in my joints, legs, and arms. My daily routine involves taking medications like hydroxyurea, folic acid, and amoxicillin to manage my condition. Staying healthy is a constant concern, especially when I have to attend school, where the risk of exposure to illnesses is high. This year, my pain became so unbearable that I had to receive IV drips and morphine for four days. It was a challenging time, but thankfully, I was able to recover, thanks to God’s grace.
Through it all, I remain thankful to God for His protection and strength. I’m grateful for my parents, Deon and Veola Sophia Stewart, who tirelessly care for me and keep me in their prayers. My church and family provide me with unwavering support, and I want to express my gratitude to the Bahamas Sickle Cell Association for providing me with a platform to represent and support fellow warriors in The Bahamas.
My journey may be filled with challenges, but I want to inspire others with Sickle Cell Anemia to keep pushing forward. Together, as a community, we can raise awareness and provide support for those who need it most. Thank you for allowing me to share a piece of my story with you all.
Reign’s Story
Meet Reign, a fun loving energetic 11 year old Sickle Cell Warrior. Reign was diagnosed with Sickle Cell at the age of 1, since then it’s been a journey. Doctor offices and hospitals runs became apart of his daily life. In the beginning he use to get sick a lot until changes were made to his diet and lifestyle, since then he’s been on the healthier side of SS achieving more good days than bad. He has a village taking care of him, making sure he’s taking his meds and supporting him through the hard times. Though his physical abilities is limited, Reign is very active in other areas. He’s an aspiring artist, plays in the Band and as some would say, he’s a “game head”.
He has his hard days when the pain keeps him home in bed but don’t think for a second it stops him from keeping up with others. Even when he’s in a crisis he chooses to fight to the very end praying the entire time asking for healing. He’s small in size however his spirit is big and bright. Reign is an inspiration to his older sisters, cousins, and friends.
“I hate having Sickle Cell but I’m happy to be me. Happy to have my family love and support me especially when I’m not doing well. My mummy hugs always make me feel safe. My daddy laying with me makes me feel good, my sisters always rubbing my back and reminding me that they love me and to fight always makes me feel strong enough to continue on. I am a Sickle Cell Warrior, brave and strong! “ – Reign
Sean’s Story
Greetings, everyone. I’m Sean Anthony Charles Stewart, and I’d like to share a bit of my journey with you. It all began at the tender age of just four months when my doctor noticed something amiss. I wasn’t hitting those developmental milestones, and I was often in tears. A heel test was conducted, and it unveiled a diagnosis that would shape my life: Sickle Cell Disease SS.
Fast forward to now, at eight years old, and I’ve already had seven hospitalizations. The most recent one occurred during our family vacation in beautiful Houston, Texas this past summer. Just as we were enjoying our time together, I started feeling weak, struggling to catch my breath. My concerned parents acted swiftly, rushing me to the hospital. It was there that they diagnosed me with acute chest syndrome. I had to undergo a blood transfusion and rely on respiratory therapy to regain my strength.
My journey has been anything but easy. There are moments when the pain is so intense that I can’t find words to express it. Instead, all I can do is cry silently, my body and tears becoming the canvas of my suffering. It’s moments like these that make me profoundly grateful to God for my parents – Deon and Veola Sophia Stewart, who are always there, tirelessly ensuring I take my daily medications, like hydroxyurea and folic acid. Thank you to my church and family for constantly praying for me. Thank you to God who has kept me!
My path is marked by challenges, but I’m determined to turn them into opportunities. I will continue on this fight with my sister Skylar. I want to be a beacon of hope for all the warriors out there battling Sickle Cell Disease. Together, let’s not give up, let’s continue to fight, and let’s raise awareness about this condition. Because every story, every journey, and every warrior’s spirit is worth sharing and celebrating.
Tyree Thomas Cargill
My name is Tyree Thomas Cargill, and I am an 11 year old living with Sickle Cell Disease. Living with SCD is very difficult, so I make the best out of my good days. I like to play video games, go outside and play with my friends, swim in the ocean, and cook. I want to be a chef. Another thing I really like to do is educate people about SCD. I want persons to know about SCD because a lot of persons don’t know about the disease and don’t know how to treat persons living with the disease.
A fun fact about me is I am a kid entrepreneur!!!!!! I have a lemonade stand, and I sell bowties and suspenders for the little fellows. Hence my nickname, “The Little Bowtie Guy”. I started my lemonade stand in 2018 with the help of my mom and family because I like to wear bowties and suspenders and I also like lemonade. My mom also wanted to teach me how to be responsible and learn how to run my own business.
It is a lot of fun running my lemonade stand, and it allows me to meet new people and inform them about SCD. Whiles living with Sickle Cell Disease is hard at times, I thank God that I have more good days than bad days. I have a great support system in my mom, family, my sickle cell family, and the doctors and nurses who take care of me. I am going to continue educating persons about SCD and encouraging persons living with the disease to never give up.
Taliah Cooper
At the age of 1 1/2 my parents found out after months of misdiagnosis and mistreatments, that I had one of the rarer forms of Sickle Cell Disease. Not only rare in The Bahamas, but in the world. This is known as SBeta+Thalassemia. I am 1/3 persons in the country to be known to have this form of sickle cell. Persons affected have a different mutation in each copy of their HBB gene: one that causes red blood cells to form a “sickle” or crescent shape and a second that reduces the amount of normal hemoglobin.
From then, till now, it’s been a constant fight between my body and I.
My first recollection of a sickle cell crisis was when I was five years old. A sickle cell crisis is pain that can begin suddenly and can last from several hours, to days, to months. It happens when sickled red blood cells block small blood vessels that carry blood to your bones. The pain can be throbbing, sharp, dull or stabbing. What my family thought was just a normal cold, quickly shifted into a severe crisis. This resulted in me developing pneumonia and ultimately spending approximately one week in the hospital. The pain was predominantly abdominal and I remember crying for someone to make it stop.
For me, things got worse as I got older and my crises would last much longer. But with pain comes purpose and although this journey can be exhausting, I’m grateful to still have the fight to keep pushing.
Camron Taylor
I was born February 18 1995 and was diagnosed with sickle cell at three months old. In 1999, I had my first stroke at the age 4 . I lost feeling on my left side of my body and had to complete weeks of therapy . In 2001, I had an acute chest syndrome in which I was transferred to the ICU and was put on 100% oxygen and then incubated. I was connected to tubes and wires. Basically a cyborg ! The doctors didn’t think I would make it through the night but luckily I have a praying family.
Kia S. Archer
Growing up and living with sickle cell has not been easy. As a child and even as a teenager now, I have had to tailor what would be normal activities to fit my physical capabilities. I have always felt sad or left out not being able to participate in some activities with my friends.
The absolute worst part about sickle cell is being in the hospital so frequently with a crisis- which is excruciating pain. Being away from friends and catching up on all of my missed schoolwork was and still is a thorn in my side. To be honest, it really sucks but that’s what it’s like having sickle cell for me. Living with this condition has taught me not to take the little things for granted and to appreciate everything and everyone in my life. It has taught me how to listen to my body and know what my triggers and limitations are.
To my fellow warriors, my advice to you is to have various coping mechanisms. My coping mechanisms are things that I like to entertain myself with that would distract me from the pain. Things such as reading, video games and watching YouTube. The support of my parents, family and friends have also helped me get through those tough times in the hospital. My parents always take care of me whenever I am sick and I am extremely grateful to have such supportive parents.
Warriors, know that it is okay to be scared but always have faith and trust in God. He is the ultimate healer and he will see you through every and ALL situations.
Living with sickle cell is not as easy as my fellow warriors and I have made it look. It’s downright HARD! I am truly grateful for your continuous support. My name is Kia Savannah Archer and I am a sickle cell warrior
Johnesia Youte
Hi, My Name is Johnesia Youte. I am 11 years old and I attend Sandilands Primary School. I am currently in grade 6 and about to move on to junior school. I am proud to be a sickle-cell warrior
D’Krizia Bartlett
Sickle cell disease is something I battled my entire life. Between the ages of 8 and 13 I basically lived in the hospital, in one week, out one week and back in another. Hospitalized about 100 times, I missed out on so many vital and formative moments in my life.
This disease not only took an awful toll on my body & physical state but sometimes it also negatively impacted my state of mind.
Sickle cell disease has caused me to experience some of scariest times of my life – but people would never know because I go through every single day of life fighting through the pain, fighting to obtain some level of normalcy and fighting for my life.
I’m so happy to be apart of this campaign because when I was a child I never saw other people with this disease or someone I could relate to. Representation is extremely important, especially within our country.
My name is D’krizia Bartlett & while I may have Sickle Cell Disease, Sickle Cell Disease does not have me ! Happy World Sickle Cell Awareness Day !
Chelese Bowe
Sickle Cell is not just a disease its a battle, its a battle that us sickle cell warriors have to fight and win.
Growing up with sickle cell has not been easy and when you have a crisis you have to constantly be in and out of the hospital, so I am thankful for my family and friends who have always been by my side. And even in hard times God has helped me in so many wonderful ways so just put your faith and trust in God and he will help you with the rest
Danielle J. Gibbs
Do not judge a girl on what you can see,
she may be fighting SICKLE CELL ANEMIA, she could be a girl in chronic pain. She comes in many forms. She is breathing but she is hurting. She may look young but feels decades older. She smiles but her heart sobs. She walks, she talks, she cooks, she cleans, she works, when she can and when she can’t. She IS, but she IS NOT, all at once. She is here, but part of her is missing. She fights battles you will NEVER see, but if you can take a moment to look behind the smile, you might see that girl IS ME. -Anonymous
Even when sickle cell has given me 1,000 reasons to cry, I fight with a smile on my face. No one truly knows my story, they’ve seen me in hospital at my worst but they don’t know that when I walk up a short flight of stairs I have to catch my breath but that never stopped me from pressing on, they don’t know the pain I feel when I’m exhausted but I still get up and get it done, how quickly I become dehydrated on a hot day, neither the nights I have to use my oxygen tank after a day or night of fun because through it all I don’t complain, I smile and keep pushing because I have sickle cell but sickle cell doesn’t have me!