I sat across Jean Claude Muhire as he intensely narrated the story of his survival. We were at his home, in the suburb of Kimisagara, and every part he shared reflected gratitude for a second chance at life. This time last year, Muhire almost lost his life to End-Stage (Stage 5) Chronic Kidney Disease. His active and healthy body had turned feeble, living on and off oxygen support. He was tormented by pain—his body was pricked with catheters and tubes—it had become so swollen, he could hardly recognise himself. Was this how he was going to die? He worried. At the age of 29, Muhire had dreams; he is an author and filmmaker. He also had his grandmother to take care of, what would become of her if he didn’t make it? When his mother died, he was so young and his father was not in the picture. It was his grandmother who raised him, he wanted to be there for her too. He had to live, if not for his sake, at least for hers. He also worried about the children he was taking care of. A humanitarian activist, Muhire runs a non-government organisation that works to support socially and economically disadvantaged children. He dedicated his life to improving the lives of these vulnerable children because he knows what it’s like to have a complex childhood, he says. The initiative works with kids mainly from Kimisagara, and they provide them with education, instil a reading culture and nurture other skills such as art and craft. They are now based in Nyarugenge and Huye districts, supporting a total of 187 children from 83 families affected by poverty. It was in the course of this that his kidneys weakened. Though diagnosis was made in 2019, his health worsened months later and at a very bad time when accessing treatment abroad was hard. This was last year when the coronavirus pandemic had just hit and the country was in lockdown. Accessing treatment within the country was also a frustration because of the restricted movements. And at this point, the dialysis along with other medical treatment he was getting was failing him. The only option left for him was to go abroad, he recalls. Most countries, however, had travel bans and those that didn’t, had their medical facilities occupied with Covid-19 patients. “It was a very hard time for me. My kidneys were slowly deteriorating and I had reached the final renal failure. Everything was too hard for me to deal with, especially that I wasn’t able to travel for treatment,” he says. At some point, he developed hypertension. His condition kept on worsening day-by-day. He had to act fast. “The doctor told me that if I didn’t seek medical help fast I was going to die. I got scared.” He was tasked to find three things; money, a hospital and kidney donor. Finding hospitals was another hustle because many of those he contacted in India, Morocco, Tunisia, Kenya, Mexico and Belgium, all declined saying they were prioritising Covid-19 patients. But a hospital in Egypt eventually accepted his request. Miracles happen He needed Rwf 20 million for this treatment abroad, and in only four days Muhire received an amount that exceeded his goal. His friend Elvis Ishimwe, who stays in the US, had helped him set up the Go Fund Me account, from which they raised the money. Among his friends and family, six of them volunteered to give him a kidney including his girlfriend, Marie Rene Uwera Ingabire. “I was lucky, even the kids at the foundation were offering to help. They were afraid I was going to die and they wanted to help,” he narrates. He now had hope, and even though the process that led him to his final surgery was extremely disturbing and exhausting, Muhire was able to reach Cairo, along with his girlfriend who donated the kidney that saved his life. “Getting our visas was really hard, we had to change plane tickets and update the hospital which made us incur more expenses. We got our visas on September 17 but travelled on October 20 last year, this affected us too because now we only had a few weeks left from the three month-stay we were allowed in Egypt. Expenses kept on piling even after reaching Cairo, we had to do more exams, we needed a place to stay and get what to eat,” he recalls. With no one else, and only counting on each other in a strange land, Muhire and his girlfriend survived a tragedy. Later, however, a Rwandan family welcomed them in their home and supported them until they were discharged from hospital. “They got to know about us when I tweeted about my condition. From then, they kept in touch with us and even sent us someone to pick us from the airport the day we arrived in Cairo. They were really good people and we appreciate them a lot. When expenses at the hospital apartments, where we stayed, became too much, they offered to give us a place to stay after we got discharged. That’s where we stayed till we came back.” They came back on December 25. He fails to get words when he tries to describe the immensity of his girlfriend’s generous act. “Yambereye umuntu udasanzwe’ (she is a special person). It’s hard to say but Marie Rene has been a blessing and I thank her parents for raising the woman she is. She would strengthen me and was there for me all through. In moments when my health would worsen, I was often rushed to emergency and every time, she would come without hesitation to be there with me. To me, she was more than a girlfriend and more like a mother. It was beyond love; I call it humanity,” he says. Ingabire says seeing Muhire healthy and alive is a feeling she can’t measure. She recalls a time when she could literally see Muhire’s life slip through his fingers, but in moments like these, she says he held onto her faith and chose to see life (they are both Catholics who met at church as choir members back in 2013). “Right now I see him laugh and I see a miracle. There was a time he couldn’t sit without support; he would sometimes fail to sleep in his bedroom saying he couldn’t breathe. We would go then go in the sitting room where he would try to sleep while seated. Even then, we had to support his body with pillows such that we found the best position for him to sleep and still be able to breathe. So, seeing someone leaving that stage and being able to sleep for eight hours, or more like others, or see him eat without vomiting, makes you feel happy. I see how happy he is and I thank God for that,” she says. Though Muhire is surviving on lifetime medication, his life is back to normal and he is about to resume his duties at his organisation.
