When Harun Gatari entered the world, he was an ordinary child filled with lofty dreams. However, his journey took an unexpected turn when he was diagnosed with Ollier disease, an exceedingly rare bone disorder.
Ollier disease is a unique skeletal condition characterized by irregular bone development, a form of skeletal dysplasia. Although this disorder may be congenital, its manifestations may not become apparent until early childhood, when symptoms such as deformities or improper limb growth become more noticeable.
The impact of Ollier disease is predominantly felt in the long bones and cartilage of the limbs’ joints, specifically in the metaphyses—the juncture where the shaft and head of a long bone meet. Additionally, it may affect the pelvis, and more rarely, the ribs, sternum, and skull, as per information on rare diseases.
Harun’s mother recounted to Born Different that her son exhibited normalcy initially but gradually developed complications, particularly in his joints. Despite suggestions to consult a traditional healer, she resisted, choosing a different path for her son.
At the tender age of six, Harun began experiencing symptoms of Ollier disease. His financially strained family, dedicated to his well-being, exhausted all available resources to procure treatment for their beloved son.
“I started facing complications at seven years old. It’s challenging; growth returns after surgery. Currently, I lack medical treatment due to financial constraints, despite my willingness to undergo the necessary procedures,” Harun explained.
As funds dwindled, Harun found himself on the streets of Nairobi, searching for sustenance he could not afford independently. Coming from a humble background, he resorted to living with a friend he met on the streets, facing the challenges of an unstable life.
In a fortuitous encounter, Harun met Evans, a compassionate individual selling soup on the streets. Their friendship blossomed, leading Evans to become Harun’s caretaker. From providing shelter to cooking meals and helping with daily tasks, Evans selflessly supported Harun.
Harun’s condition, marked by abnormal cartilage growth in the long bones, resulted in deformities in his feet and legs, especially the right leg. Basic tasks like holding water, brushing, writing, and typing became formidable challenges due to the discomfort in his hands.
Despite these obstacles, Harun remains resolute, expressing his primary desire for proper medical treatment to pursue his ambitions. He dreams of a day when he can lead a normal life, inspiring others with his resilience.
“My biggest wish is to receive the right treatment from qualified doctors, enabling me to live a normal life. People find inspiration in how I navigate my condition. All I aspire to is having functional hands to work for myself and my family. I am still dreaming; I haven’t abandoned my aspirations,” the determined young man shared.