Founder’s story
Turning Pain into Purpose: Why I Founded Hope4PKD
People often ask me why I started Hope4PKD. The answer is deeply personal.
Long before Hope4PKD became an idea, Polycystic Kidney Disease (PKD) had already become part of my family’s story.
I grew up watching my mother, Margaret Toyin Nwakaihe, live with PKD. She was a nurse who chose to retire early so she could focus on raising our family. Although she lived with a chronic illness, she never allowed it to define our home. Instead, she taught us lessons that have stayed with me for life.
She was intentional about the way we lived. She encouraged healthy eating, insisted we drank plenty of water, paid close attention to hygiene, and taught us that taking care of our bodies was a responsibility, not an option. Looking back now, I realise she wasn’t simply raising her children—she was quietly teaching us resilience, discipline, and hope while carrying the weight of a disease most people around us knew very little about.
My mother’s journey with PKD was not easy. She endured years of treatment before eventually receiving a kidney transplant in 2009. Although my family did everything possible to provide the best available care, the emotional commitment and financial demands of long-term treatment and transplantation were immense. Yet through it all, one thing never changed—her unwavering faith in God and her determination to keep living with hope.
For many years, PKD was simply something my family lived with. I understood that my mother was ill, but I did not fully understand the disease itself.
That changed years later.
My elder brother, John Ifeanyi Nwakaihe, had already been diagnosed with leukemia in his late teens. During his treatment, his kidneys deteriorated rapidly. Beneath it all was an underlying genetic condition that made his situation even more complex. In 2022, when he came to Abuja to begin preparations for a possible kidney transplant, I immersed myself in learning everything I could about PKD. I spent countless hours researching the disease, understanding its progression, treatment options, and the realities patients face every day.
What I discovered was overwhelming.
PKD was not simply a kidney disease. It was a condition that affected every part of a person’s life—their health, their finances, their mental wellbeing, their family, and their future.
But it wasn’t research that changed me most.
It was one night.
I woke up in the middle of the night and found John sitting quietly, staring at the ceiling. He was counting his fingers and speaking softly to himself.
He kept repeating, “I’m not going to die.”
“I’m not going to die.”
That moment has never left me.
I realised I wasn’t just witnessing a physical illness. I was witnessing fear. The fear of a young man confronting his own mortality. The fear of uncertainty. The fear that so many patients carry silently because they do not know how to express it.
John eventually began dialysis while awaiting a transplant. Sadly, he passed away before that transplant could happen.
Losing my brother was devastating.
He was more than my elder brother. He was someone I admired deeply, someone I hoped to build a future with. We spoke about our dreams, the businesses we wanted to build, the lives we hoped to create, and growing old together. His passing left a void that words cannot fully describe.
While I was still grieving, my mother’s health deteriorated significantly.
I became one of her caregivers.
Looking after her during those months meant that I hardly had the opportunity to fully process my brother’s death. My focus shifted to ensuring she was comfortable, cared for, and never alone.
When she passed away in April 2023, it felt as though an entire chapter of my life had closed.
Even in those painful moments, another reality confronted us. We still had to navigate hospital procedures, settle outstanding medical bills, and handle the practical responsibilities that come after losing someone you love. Illness does not only affect patients. It reshapes entire families.
During those months spent in hospitals, dialysis centres, and clinics, I met many other families walking journeys similar to ours. Some struggled to afford dialysis. Others could not buy essential medications. Many had little understanding of the disease or where to find reliable support.
I began researching organisations supporting PKD patients around the world. I found remarkable initiatives in countries like the United States and Australia that were raising awareness, supporting patients, funding research, and building communities around the disease.
Then I searched for something similar in Nigeria.
I found almost nothing.
That discovery stayed with me.
The truth became painfully clear.
Patients living with PKD in Nigeria did not only need financial assistance.
They needed guidance.
They needed trustworthy information.
They needed verified support.
They needed emotional encouragement.
They needed advocates.
Most importantly, they needed a system that could help them navigate one of the most difficult journeys of their lives.
The idea that had quietly lived in my heart for years finally became clear.
Hope4PKD would not simply be another charity.
It would become a patient support ecosystem.
An organisation designed to ensure that no one living with PKD has to walk this journey alone.
Today, Hope4PKD exists to connect patients with support, provide trustworthy medical verification, mobilise financial assistance, build awareness, strengthen partnerships, and create a compassionate community for individuals and families affected by Polycystic Kidney Disease.
Every patient we support reminds me why this work matters.
Every caregiver we encourage reminds me of my own journey.
Every donation, whether it is ₦5,000 or much more, represents something greater than money. It represents hope. It tells a patient, “Someone believes your life is worth fighting for.”
People sometimes ask whether Hope4PKD was founded because I lost my mother and my brother.
My answer is simple.
Hope4PKD was not founded because my family experienced loss.
It was founded because our journey revealed how many other families were walking the same path without the support they deserved.
If there is one belief that guides everything we do, it is this:
No patient should have to navigate Polycystic Kidney Disease alone, and no family should have to carry its burden without support.
That is the promise behind Hope4PKD.
It is the promise I hope to keep for every family that comes after mine.