My journey with sickle cell disease began long before my daughter was born. I was 14 years old when I watched my younger sister die from sickle cell disease. She was only 11.
I still remember that day with painful clarity. I was running frantically through the hospital, desperately searching for medical staff while my mother knelt beside my sister and prayed. When I finally found the staff, they were asleep. By the time they came, it was too late.
That moment never left me.
Neither did the suffering I watched my sister endure throughout her life. Her pain crises were traumatic and relentless. During some episodes, one side of her face and head would swell severely, and in her final years, avascular necrosis brought even more pain and loss of mobility.
My sister was born in Ghana in 1995 and diagnosed at birth. But even with a diagnosis, she did not grow up with the kind of specialist care many people might assume existed. At the time, comprehensive sickle cell care in Ghana was limited for many families. Newborn screening, specialised clinics, regular follow-up care, and access to treatment were not consistently available. A diagnosis alone did not guarantee structured support or access to a dedicated medical team.
Watching all of this shaped me deeply.
Because of what I witnessed as a child, I knew my own genotype early and made a firm decision that I would never knowingly marry someone who also carried the sickle cell trait. That decision did not come from fear alone. It came from trauma, grief, and the unbearable memory of watching my sister suffer.
Years later, I met my husband in Australia. Early in our relationship, I raised the topic of sickle cell disease. At the time, our church also required sickling status testing before marriage, so he was tested. When we returned for the results, we were reassured there was nothing to worry about.
We trusted that answer.
We went on to have our first child, and everything seemed straightforward. Then came our second pregnancy. Doctors became concerned because the baby was measuring in the lowest percentiles across multiple growth markers. Because of my family history, they decided to investigate further. After she was born, she was screened for sickle cell disease.
Two weeks later, we received the call: our daughter, Neriah, had sickle cell disease.
The shock was overwhelming.
I had spent years carrying the memory of my sister’s suffering. I had asked what I believed were the right questions. I had taken what I thought were the necessary precautions. So when my daughter was diagnosed, I felt shattered — confused, betrayed, and deeply afraid.
I also felt silenced.
There is often so much stigma surrounding these conversations. People can speak as though parents knowingly chose this outcome and therefore deserve blame. But life is not always that simple. Sometimes people are misinformed. Sometimes communication fails. Sometimes critical questions are misunderstood. And sometimes healthcare systems simply do not have enough awareness of sickle cell disease.
That was our reality.
When we went back seeking answers, we came to understand that when we had asked about my husband’s “sickling status,” the doctor interpreted that to mean whether he had sickle cell disease itself, not whether he carried the trait. In Australia, particularly at that time in 2015, sickle cell disease was still not widely understood compared with many African countries where these conversations are more common. We received no detailed genetic counselling, no clear explanation about carrier status, and no printed report. We were simply told there was nothing to worry about — and we trusted that reassurance.
That experience is one reason I believe sickle cell awareness must go deeper.
Awareness cannot stop at slogans or reminders to “know your genotype.” Families need accurate testing, clear communication, proper genetic counselling, and healthcare professionals who understand both the science of the condition and the human impact it carries.
When Neriah was diagnosed, fear changed everything. She suddenly felt too fragile to even hold. Every cry made me panic. Every yellow tinge in her eyes or tongue made me fear something was wrong. I was no longer only a sister carrying painful memories — I was now a mother in Australia trying to navigate a condition I deeply feared, yet still did not fully understand medically.
During that season, my mother became a source of strength for me. She reminded me not to let fear have the final say. She spoke to me about Zoe — the God-kind of life — and that is how Zoe became part of Neriah’s name. We chose her names prayerfully: Neriah, because we wanted her to be a light in this world; Adepa, because we believed she was a precious gift from God; and Zoe, because we chose to believe that the life of God would speak louder than her diagnosis.
Still, faith did not remove the realities of caregiving.
At six months old, Neriah experienced her first sickle cell crisis — dactylitis in her right foot. We spent three days in hospital, and that was when she began hydroxyurea treatment. Later came even more serious complications. In July 2020, she suffered a silent stroke and was found to have elevated cerebral blood flow velocities. From that point onward, our journey became even more medically intense.
At the same time, family life continued unfolding around us. We continued growing our family — not blindly, but prayerfully and with wisdom. We sought genetic counselling and tested future pregnancies. During this period, I also fought for my mother to remain in Australia to help care for Neriah. Our first immigration application was rejected because there was supposedly insufficient evidence that sickle cell disease required a dedicated carer.
That experience exposed another painful gap: how poorly understood sickle cell disease can be, even within systems making life-altering decisions for families.
After a long process, my mother was finally granted permanent residency on a carer visa in November 2024.
Our transplant journey also unfolded slowly.
After Neriah’s silent stroke, doctors suggested testing her siblings to determine whether any might be a suitable bone marrow donor. That was when we discovered her brother was a perfect sibling match.
Even then, saying yes to transplant was not immediate.
Our first transplant consultation took place in August 2021. At the time, the conditioning regimen primarily used was Busulfan-based, and we were informed that the risk of infertility was significant. My husband and I did not feel at peace proceeding then, so we waited. We prayed, continued learning, and took each day as it came.
Years later, transplant re-entered the conversation with a different sense of timing and peace. By then, the centre had largely moved toward using Treosulfan-based conditioning for children with sickle cell disease, which was explained to us as potentially less harmful to fertility, although long-term outcomes are still being studied. Neriah was also able to undergo fertility preservation through ovarian tissue cryopreservation before transplant. It did not guarantee future fertility, but it gave us peace knowing we had considered her future both prayerfully and practically.
This stage of the journey reminded me that behind every major medical decision is a family trying to balance wisdom and hope. For us, bone marrow transplant has represented not only risk, but possibility — the possibility of healing, freedom from disease, and a different future for our daughter.
In the meantime, Neriah continued treatment. Because of her elevated transcranial Doppler results, she later began exchange transfusions in October 2024. Initially these were performed manually, but repeated cannulations became increasingly traumatic, and eventually she required both a Port-a-Cath and automated exchange transfusion access.
What has stayed with me most throughout this stage is the quality of care she received.
Her team at John Hunter Children’s Hospital did not only treat her medically — they built trust. They explained procedures in ways she could understand. They sought her consent. They made room for her fears and emotions. They involved child life therapy when she became anxious. They cared for her as a whole person, not just as a patient.
That kind of care matters.
For children living with chronic illness, safety is not only about the medicine they receive. It is also about whether they feel seen, respected, and emotionally supported through repeated procedures and medical trauma. Neriah formed such a strong bond with her care team that she now looks forward to her exchanges — not because the process itself is easy, but because the people around her made her feel safe.
That, too, is part of the story of sickle cell care.
Not just disease.
Not just treatment.
But dignity.
Today, as we prepare for transplant, I carry many things at once: grief from the past, gratitude for how far we have come, and hope for the future.
My story sits at the intersection of loss and motherhood. I first knew sickle cell disease as a sister watching a loved one die. Now I know it as a mother in Australia fighting for her child to live well — and, by God’s grace, to one day live free from it.
That is why I share our story.
I share it because awareness must go deeper than simply telling people to “know your genotype.” Yes, genotype matters. Testing matters. Counselling matters. But so does communication. So does whether healthcare professionals truly understand the condition. So does whether families are met with empathy instead of judgment. And so does whether support systems recognise the full weight caregivers carry every day.
To other caregivers, my encouragement is this: ask questions early, know your genotype, seek proper counselling, request written reports, pay attention to detail, and never be ashamed to advocate for your child. Ask questions even if they feel small. Follow up. Seek clarity. And never carry this burden in silence.
— Jacquelene Opoku