Patient Stories

I Was Born A Warrior

Poem Written by Edonusem H.A.Y. Pomeyie, 15, NESCC Patient

I was born a warrior, a man born with the fight within him, Sickled at birth, but not chiseled to death. I was born a warrior, Born to fight for my every breath, Born to fight to become a victorian, Born to live a war within me,

I was a man born with the fight within me,
A man grown with the pains around me,
With a crisis from birth I was grown pained,
Me my story and I are one,
Because me I was born to die early,
Because it is a belief where I’m from that we sickled don’t live past 9,
But the Irony is me the warrior sickled had to witness my twin chiseled to death.

Sickled at birth,
I learned the meaning to live,
In and out of hospitals that became my second home,
In and out of crisis I was raised a warrior,
I learned how to fight the battles within me because I had to live to bring a change,

I had to live past 9 cause I was not gonna leave my mom behind,
Because the death of a twin Ironically taught me how to live,

Cause me I’m not chiseled to death,

I’m not chiseled to pain,
Though there are times my heart and body feels chiseled,
I’m not chiseled to the sickle,
I’m chiseled to change,
Chiseled to happiness,
Chiseled to God,

Chiseled to bring my story, my future, and me to the world around me.

“We are the parents of a sickle cell patient, and below is our experience with the disease."

Sickle cell is a disease that no one would wish on any child, however, some people have it, including our child, and it’s very important to learn about it, and manage it effectively.

With proper management such as consistency with appointments, taking medications as directed by doctors, hydrating well, staying cool in hot temperatures, and staying warm in cold temperatures helps tremendously to prevent sickle cell crisis.

Failure to properly monitor the disease recommended actions can cause a crisis, and could make the patient severely ill. This can mean extended hospital stays, and sometimes life threatening implications.

As a family that has to manage a sickle cell patient, the NESCC has been a great resource, and an avenue for support through programs, and conferences. At these forums we get to hear from doctors and practitioners, as well as other parents and learn about what works well versus what doesn’t. We also get to hear about research work in the field and the various efforts to find a cure to the disease.

Earlier on when our child was diagnosed with the disease, we did not know any better, and at the time the idea of taking the child to the ER every time they had a fever of 101 or higher was very challenging. Sometimes you get called from work because of a fever, and you would have to stop anything you are working on and reach home to take the child to the hospital. Those were difficult days.

However, with better management, prayer, and counseling, our child is doing very well, and the frequency of crisis and hospital visits have reduced drastically. Overall we have a better handle on managing the disease, and this has allowed our child to live a normal life like their peers.

In all this, our child’s doctors at UMASS Medical Center, and the NESCC have always been there through the process. Offering expedited assistance and support each time we have needed it.

This tremendous support has been Godsend, and it has made a huge impact on dealing with a child with sickle cell.

We have been blessed and we are grateful.”

A Gratitude Story

By Valarie Haynes

This is my gratitude story, and it will continue to be written.

Growing up, I had excruciating bone pain that started at random times. It would typically last a day or less. As I’ve gotten older, the pain has become worse and more frequent, leading me to visit every doctor I could in search of relief and answers. In 2021, after countless doctor visits and tests, I was diagnosed with Sickle Beta+ Thalassemia. Most of the time, sickle cell is diagnosed shortly after birth; however, mine went undiagnosed until I was 26. I grew up believing I had traits of sickle cell and Thalassemia, but had no idea that they also created a form of Sickle Cell disease when combined.

During this journey, I learned that I had damage to my bones and bone marrow due to a lack of oxygenated blood, as well as an enlarged spleen. However, it wasn’t until I discovered abnormal blood vessels in my eye that I was directed to haematology to be tested for sickle cell disease. It was scary and life-changing to realise that much of this damage had been silent. I felt let down by my own body and scared for my future. I immediately questioned whether I would be able to have a healthy pregnancy. This launched me into a journey of healing and self-education about this discovery. In the fall of 2021, I experienced a retinal occlusion, a blood clot in my eye that temporarily caused me to lose my eyesight. Had it travelled any further, it could have resulted in a stroke, but God protected me.

Fast forward to the first trimester of my pregnancy. All my fears resurfaced—fears of being let down by my body and doubts about my ability to bring something beautiful into the world after hearing such negative things about my health over the past couple of years. I knew that the only way to find hope was to start writing down God’s promises and what I knew to be true, rather than the lies that replayed in my head. I placed index cards all over my home to help me get through each day, reminding me of God’s plan and purpose for me.

These affirmations carried me through the first trimester and laid the foundation for the challenges that awaited me in the second trimester.

In my second trimester, I went to the hospital for a persistent headache, thinking it might be related to my blood pressure. I was sent home. Later that week, I returned to the hospital with pain resembling contractions that were so severe I couldn’t sit. My husband and I advocated for a deeper investigation, as we knew something was wrong, yet I was sent home again. A week later, I went back once more. My symptoms were downplayed, and I was sent home. Looking back, it was the love between my husband and me and the supernatural strength that sustained us. I continued to work, commute to the city, and complete leadership training, all by God’s grace. After a month, my hematologist became involved, and I finally received the necessary imaging, revealing renal infarcts—small areas of my kidneys that had died off due to blood clots, cutting off healthy blood flow. It brings tears to my eyes as I write this, thinking about how not only was I protected during that time, but my baby was also covered. There was no harm to him, and he grew wonderfully, even through all of that. God is a promise keeper when you lean on Him for strength. It was truly all I could do. I began monthly exchange transfusions and other treatments to get me through the rest of my pregnancy. After the start of my second trimester, I lost count of the number of hospital visits and doctor appointments. By the end, I felt blessed to have a team of doctors committed to a safe and healthy delivery for both Nathaniel and me. My delivery was nothing short of God’s guidance and glory. In moments of fear, I leaned on Him, repeating, ‘He’s faithful in every season, so why would He fail now?’ and ‘Christ is a firm foundation; He’s never let me down.’

As I write all this with the perspective of hindsight, I realize that in each trial and season, my faith was tested, and I fought fear and hopelessness. Then I understood that I had no choice but to lean a little harder on God’s promises. Each season prepared me for the next. The Lord has kept me throughout my life and continues to do so daily. He has proven over and over that He’s present, guiding me in every health decision and during every crisis and hospital visit. Rather than my body letting me down, it held me up; it’s stronger than I could have imagined. I feel so full, so grateful, to share my story and to proclaim how good God is.