The newsletter for a UK charity driving Digital Health Initiatives for kids and families impacted by Sickle Cell and Thalasseamia.
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How I came to know about Sickle Cell Anemia.
Published over 2 years ago • 3 min read
Educate yourself and others, spread awareness, and consider donating.🧡
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Hiiiii there,
I feel compelled to share my story about sickle cell anemia because of recent events. Maybe this letter is more for everyone than just you, maybe this letter would give you some form of hope that someone out there still saw the need to make a difference, maybe you are seeing this for the first time and would motivate you to make a difference. Permit me as I try not to mince my words.
I have never seen anyone strive like I saw sickle cell warriors- a case of slow down, we would understand if you did not but there they are aiming for it all! The first time I ever understood what sickle cell is, was in secondary school. My classmate, a top student, was one of those extraordinary individuals known as sickle cell warriors- a very befitting name. At the time, I didn’t fully grasp the extent of his struggle. I only knew to treat people well, a kindness I extended to him naturally. Our houses were close, but I never regarded him as a friend—just a classmate I was close with.
We weren’t friends because he never shared his struggles, and I never asked. I never shared mine either—though my struggles were nothing compared to his. We were just kind to one another.
It’s funny how, despite not being friends, when our house was robbed and I was the only one the robbers didn’t see because I hid in my wardrobe, I called him to come and save us😂. When he died, I didn’t cry. It was just sad. But now, if I could, I would give him years of my life just to see him finish his medical school and maybe get married and have kids, maybe see his grandchildren and...
You might think this is why I write for Crescent Kids, why I show up every week. Actually, I joined CK after resigning from a job. It was the first time I had a chance after months without income. I was eager to give my all. Months in, it became clear that I was part of a bigger cause and that I could make a difference- that anyone can make a difference.
Recently, we lost another sweet soul to this battle, someone I didn’t even know was fighting it. This has left me searching for ways to do even better. I want to share my unfiltered thoughts with you.
Reader, think of a young child, barely old enough to tie their shoes, already learning to handle pain that would overwhelm most adults. Picture a teenager or adult trying to keep up with school or work and friends while frequently going to the hospital and dealing with painful episodes. Imagine a parent, watching their child ..., knowing that love alone can’t stop the pain. This is the reality of sickle cell anemia.
But within this reality lies incredible strength and an unbreakable spirit. These warriors teach us about courage, resilience, and hope. Their journey through the healthcare system often feels overwhelming and lacking. They need better support, more understanding, and ongoing advocacy.
Please, educate yourself and others, spread awareness, and consider donating in time, resources, money, blood. Anyone can make a difference. What is your story?
Dear Caregivers and sickle cell warriors, with the orange button below, you hold the power to tell me how we can make this journey a little bit better.
1. This week, Mary shares how a foot massage eased her crisis.
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2. This week, Dunstan shared how "a good friend is generally someone willing to learn, understand, and be empathetic. Chronic conditions affect people differently, but these values provide a good foundation for optimal support."
🤭🚀Coming Up Next:
Stay tuned for exciting content in the upcoming newsletters! We definitely have more inspiring stories and valuable information to share.
September Edition: Sickle Cell Awareness Read Time: 5-10 minutes Who should read this?Parents, carers, teachers and anyone supporting a child living with sickle cell. Honor, Rest, and Big Steps Forward. Hello Reader, Welcome to the World Sickle Cell Awareness Month. While the rest of the world uses this month to learn about the condition, we want to start by spotlighting our parents/caregivers, who carry the weight of it all. Whether your child has a mild genotype and rarely misses school, or...
August Edition: Back to School Read Time: 5-10 minutes Who should read this?Parents, carers, teachers and anyone supporting a child living with sickle cell. The Invisible Backpack Item Hello Reader, As August rolls in, families all over the world are preping for school. But for a parent of a child with sickle cell, packing a school bag feels a bit different. You are also packing emergency numbers, extra water bottles, and perhaps a quiet worry. We know that sickle cell looks completely...
🚨 HEATWAVE ALERT Read Time: 5-10 minutes Who should read this?Parents, carers, teachers and anyone supporting a child living with sickle cell. Heatwave: Tips to Keep Your Child with Sickle Cell Safe Hello Reader, The UK is experiencing another heatwave, with temperatures climbing into the 30s°C and an amber heat-health alert in place across England. While many people see sunshine as a chance to enjoy the outdoors, families living with sickle cell know that extreme heat can bring real health...