Our parents died seeking solution to our condition– Siblings suffering from weak muscles

Marvelous Cyril, 27, and Nnenna Cyril, 21, both grappling with the debilitating effects of muscular dystrophy, have faced unimaginable battles since childhood. For these residents of Madalla, a community on the outskirts of Abuja, their lives have been marked by loss, abandonment, and struggle.   The siblings open up to BIODUN BUSARI about the pain of losing their parents, betrayals from loved ones and daily dependence on others for mobility

Marvelous Cyril:

At what age did you first experience the onset of muscular dystrophy?

I was just a child when I was diagnosed with muscular dystrophy, around the age of eight. It all began with subtle signs—frequent falls and struggling to stand on my toes. Soon after, walking became an uphill battle. As the days turned into years, my condition worsened. My parents did everything they could to help, but there was little that could be done. In the beginning, I believed I would outgrow it, but that hope slowly faded. Watching my friends walk, play, and run while I couldn’t join them filled me with sadness. In short, this has been my reality ever since.
Can you describe the condition?

Muscular dystrophy is a genetic disorder that leads to progressive muscle weakness and degeneration. In my case, neither of my parents had the condition. I’m the second of five siblings and the eldest son, yet, I was the first to be affected. My youngest sister, Nnenna, also suffers from it. Our eldest sibling is a sister, followed by two younger brothers who, fortunately, haven’t shown any signs of the disease.

How did your parents react to this physical challenge?
My parents were deeply concerned when they noticed my condition. From that moment, they began running from pillar to post, desperately searching for a solution. My mum, in particular, was profoundly affected. She was an emotional person, and the weight of my illness took a heavy toll on her. I believe she eventually slipped into depression, which ultimately claimed her life. My dad, too, was devastated. He did everything in his power to help me—consulting specialists, exploring treatments—but nothing seemed to make a difference. The emotional strain on him was immense, and it broke him as well before he passed.

What year did your parents pass away?

My mother died in 2011, while my father died the following year in 2012.

What solutions did your parents seek, and how did they support you before their demise?

My parents, devout Christians, along with my siblings, initially turned to their faith for answers. They began taking me from one church to another, seeking spiritual healing in hopes of a miracle. Despite their fervent prayers and countless visits to various congregations, I saw no improvement in my condition. Eventually, they sought medical advice, taking me to a hospital where a doctor delivered the sobering news: while muscular dystrophy could not be cured, it could be managed with the right approach. This revelation marked a turning point in our journey, shifting our focus from spiritual intervention to medical care.

As I mentioned, my parents did everything they could to support me. However, I can’t say for certain whether they reached out to organisations or the government for assistance. They did speak to family and friends about our situation, but unfortunately, we received little substantial help. It felt as though no one truly understood the depth of our struggle or was willing to step in when we needed it most.

Have you visited the hospital since your parents passed away?
Yes, I have been to the hospital. A compassionate woman, deeply moved by my condition, took the initiative to bring me to a hospital in Gwagwalada in Abuja. There, the doctor informed her that I required therapy to manage my muscular dystrophy. However, I believe the treatment was quite costly, as she hasn’t mentioned anything about it since that visit.

What exactly did the doctor advise regarding the management of this condition?

I believe the doctor also suggested the use of prosthetic devices as a potential solution. He explained that both my sister and I could experience significant improvements in our mobility with the right prosthetics to support our limbs. This option seemed promising, as it could enhance our quality of life and help us regain some independence.

Did the doctors reveal the cause of this condition?

The doctors mentioned that I have muscular dystrophy after conducting a thorough examination last year. Interestingly, I learned that my paternal grandfather had some leg defects, but I’m not sure if there’s any correlation between that and my condition.

How do you manage daily tasks at home?

Living with muscular dystrophy has been incredibly challenging. Daily life is filled with difficulties, and the support I receive is limited. My siblings are my main source of help; they assist me in moving around and performing even the simplest tasks. When I want to go outside, they carry me to my destination, and I have to wait there until they return to take me back home. This reliance can be quite isolating.
How do you resolve your financial challenges?

We are five siblings. I and my sister, Nnenna, suffer from muscular dystrophy, while our three older siblings—my sister and two brothers—are the ones working to support us. They handle the bills and other necessities for the family, which is no easy feat. Sometimes, the weight of these responsibilities overwhelms them, and they express their frustration, which is understandable. They are doing their best to provide both physical and financial support for all of us.

How has your local community helped?

Unfortunately, I don’t have many friends, and our family lacks a strong support network. We rarely receive assistance from anyone. However, our situation changed when a journalist Adeola Fayehun featured us in a video interview, using her platform to raise awareness of our plight. This outreach has brought some financial help, but it’s still a struggle.

Did you receive any formal education?

I had to stop my education in Junior Secondary School due to my condition.

Has any extended family member offered assistance?
Yes, they promised to help us after our parents passed away, but unfortunately, those promises never materialised. When we went back to our village in Enugu State following our parents’ death, our relatives assured us they would support our education and care.

However, after waiting for four long years – from 2015 to 2019–without getting any form of help, we had no choice but to leave the village in search of a better life.

What are your ambitions?
I’m currently learning graphic design, but I haven’t had much success so far. I believe that with financial support, I could further my education and become a professional in this field.

How do you think Nigerians can help you and your sister?

I appeal to Nigerians for financial assistance to acquire the prosthetic devices recommended by the doctors. Additionally, we were informed that our condition could improve significantly if we were treated abroad. I also need a laptop to enhance my graphic design skills, as I want to become self-sufficient and not rely solely on others.

How would you describe life with these challenges?
Life has been extremely difficult, suffocating, and overwhelming. I rely on others for almost everything, even the simplest tasks. It can be isolating, and I often feel trapped, especially since I can’t freely go out and engage with the world like my peers.

 

Nnenna Cyril:

When were you diagnosed with this condition?

It was when I was eight years old, shortly after my mother’s death. For more than a decade, I’ve been grappling with this disease. Like my brother mentioned, it’s incredibly painful to watch my peers enjoy their freedom, while I depend on others for even basic movements. If no one is around to carry me, I must use my hands to drag myself around the house, and I can’t go outside without assistance. Life has been incredibly tough.

What symptoms did you observe?

Initially, I struggled to stand or walk properly. As time went on, it only got worse, to the point that I could no longer stand or walk at all. It has been a challenging journey since then.
Did you experience any pain in your bones or muscles when the symptoms started?

No, I didn’t have any physical pain initially. The most painful aspect of my condition now is dealing with the overwhelming challenges and the lack of help to alleviate my suffering.

Have you received any medical help for your condition?

Yes, a relative once took me to a hospital in Nasarawa State. As Marvelous mentioned, I need therapy and prosthetics. It would be beneficial to receive advanced medical care abroad, as we discovered that wheelchairs are not suitable for us due to our lack of strength and the bumpy terrain we live in. Navigating our environment with wheelchairs has proven to be more difficult than helpful.

Have you received any support from family or friends?

Unfortunately, I don’t have friends or supportive family nearby. With our condition, it’s hard to find people who want to engage with us. Naturally, many people shy away from individuals with physical challenges. I’m the youngest sibling, and from what I’ve gathered, our relatives have been unwilling to help us.

Do you have any vocational skills?
I don’t possess any formal vocational skills, but I enjoy drawing. If I receive financial support from Nigerians, I believe I could undergo training in drawing and painting to become a professional and support myself without relying on others.

Has your community been supportive?

Occasionally, kind-hearted individuals may provide some small assistance, but overall, it feels like we’ve been abandoned in our dilapidated home. I often wish my siblings and I could relocate to a better environment, as I believe everyone deserves a decent quality of life. The reality is that we mostly rely on my three working siblings for support.

What is your ambition?

I aspire to become a nurse, as I have a passion for helping others. Unfortunately, I had to drop out of school after Primary 5. However, I believe that with sponsors, I can continue my education.

What is your general view of life?

Life has been incredibly challenging. It feels boring and frustrating to be dependent on others for daily activities. I sincerely wish for a positive change in our situation.
How do you create happy moments for yourself amid these challenges?

I find joy in the arts, which I often turn to for comfort. Drawing brings me happiness, and when I’m not drawing, I enjoy reading books, which helps me grow personally. I also love cooking and watching movies to uplift my spirits.