Battling Retinoblastoma with Faith and Resilience.
In a world where early diagnosis can mean the difference between life and death, Joy Marangu’s story is a testament to the power of perseverance, faith, and the importance of raising awareness about rare medical conditions. Her daughter’s battle with retinoblastoma, a rare form of eye cancer, highlights the challenges parents face when navigating the healthcare system and the emotional toll of fighting for a child’s life.
Joy Marangu and her husband’s journey with their daughter, Aniyah, took an unexpected turn when they visited Avenue Thika for a routine check-up. Aniyah had developed a cold, and they sought medical attention, unaware that this visit would lead to a crucial discovery about her eye health.
Unlike the previous pediatrician, the doctor at Avenue Thika was meticulous, thoroughly examining Aniyah’s eyes, ears, and chest. During the examination, she noticed something unusual in Aniyah’s eye.
“The doctor asked if I had noticed anything unusual in her eye,” Joy recalls. “I told him yes, and he immediately recommended we see an ophthalmologist. I was shocked because our previous pediatrician had dismissed my concerns, saying the baby could track objects and there was nothing wrong.” Even after Joy and her husband went back to their previous pediatrician with the recommendation, she was still not convinced that anything was wrong.
Despite the initial dismissal, Joy and her husband decided to seek a second opinion. They visited MP Shah Hospital, only to find the eye clinic closed. Undeterred, they went to the main Lions Eye Clinic, where their daughter’s eye was dilated, revealing a more serious issue than they had anticipated.
“We didn’t think it was anything serious,” Joy says. “But the doctor recommended we see a retinoblastoma specialist. That’s when we learned there was a mass growing in her eye.”
The diagnosis of retinoblastoma, a rare cancer that develops in the retina, was devastating. The specialist referred them to Kenyatta National Hospital for further treatment. However, the journey was far from straightforward.
At Kenyatta Hospital, Joy and her husband faced several hurdles, including a lack of clear communication. The first resident doctor bluntly informed them that their daughter’s eye would have to be removed, without offering any counseling or support.
“The way the news was delivered was cold and unfeeling,” Joy explains. Fortunately, a compassionate student doctor stepped in, offering much-needed guidance and reassurance.
Determined to explore all options, Joy sought multiple opinions, visiting nearly other five different hospitals and specialists.
Each consultation brought its own challenges, from repeated ultrasounds to conflicting advice. However, one doctor’s words stood out—Dr. Mundia from Kikuyu Eye Hospital advised, “Don’t waste time consulting around. This is not something you sit with. Take action.”
Realizing the urgency, Joy and her husband decided to proceed with treatment at Kenyatta National Hospital, settling with Dr. Njambi, who provided them with clarity, support, and a treatment plan they could trust. They were also guided by Dr. Kahaki, who played a crucial role in their daughter’s care.
Their daughter – Aniyah underwent surgery to remove the affected eye, followed by chemotherapy. The process was grueling, both physically and emotionally.
“The first chemo was really tough,” Joy recalls. “She got very sick, her platelets dropped, and she started vomiting uncontrollably. It was heartbreaking to see her suffer.”
Despite the challenges, Joy found strength in her faith and the support of her family. “God’s grace was sufficient,” she says. “I took it one day at a time, focusing on eating well and getting enough sleep. It’s amazing how those small things kept me going.”
Joy’s experience has made her an advocate for raising awareness about retinoblastoma. She believes that pediatricians and healthcare providers need to be better informed about the condition to ensure early detection and intervention. “It’s sad that some children lose their lives because of delayed diagnosis,” Joy says. “If we had known earlier, perhaps the outcome could have been different. That’s why it’s so important to share our story and educate others.”
Today, Aniyah is thriving with a prosthesis, and the family has found a new normal. While the journey was fraught with challenges, Joy’s resilience and determination shine through.
“I thank God for bringing us through this,” she says. “It wasn’t easy, but we made it. And if our story can help even one family, then it’s all worth it.”
Joy’s story is a powerful reminder of the importance of trusting parental instincts, seeking multiple opinions, and advocating for better healthcare. It’s also a call to action for increased awareness and education about rare conditions like retinoblastoma, so that no child has to suffer needlessly.
Through her journey, Joy Marangu and her husband have not only fought for their daughter’s – Aniya’s life but have also become a beacon of hope for other families facing similar battles. Their story is one of courage, faith, and the unyielding love of parents.
