When Harun Gatari was born, he was a normal kid with great aspirations. But then his life began to change, as he developed Ollier conditions, a very rare condition that affects bones.
Ollier disease is a rare skeletal disorder characterised by abnormal bone development (skeletal dysplasia). While this disorder may be present at birth (congenital), it may not become apparent until early childhood when symptoms such as deformities or improper limb growth are more obvious.
Ollier disease primarily affects the long bones and cartilage of the joints of the arms and legs, specifically the area where the shaft and head of a long bone meet (metaphyses). The pelvis is often involved; and more rarely, the ribs, breast bone (sternum), and/or skull may also be affected, according to rare diseases.
His mother told Born Different that his boy was born just like this
“He was born with a normal arm then the condition started to worsen from the joint gradually. They told me to go to the witch doctor and I told them I am not going there,” she said.
At six years old, this young man started to develop symptoms of this particular disease, and his family, which is quite poor, started to pull all the capabilities they had to treat their beloved son.
“I started having complications at the age of seven years old. You can imagine how hard it is, the growth comes back, after the surgery. Right now I am not receiving medical treatment because [even though] I will be willing to have these funds to receive those kinds of treatment,” Harun said.
Funds ran out eventually and Harun resorted to the Nairobi streets to look for some meals, given that he couldn’t afford it on his own terms.
“I come from a very humble background, we are poor, we don’t live in a stable life, I live with a friend of mine who took me in, I had no place to go, I was living by then on the street,” he said.
It’s here on the street that he met Evans, who became his dear friend and decided to help him with his struggles.
“I met Harun on the street, where I sell soup. He came over, we talked, I helped him find a place to sleep,” Harun said.
Evans is now the caretaker of Harun, doing everything he needs from preparing food to fitting his shoes into his feet as the two go to the market.
“He has been cooking food for me, making tea and making sure that I have everything I need available on my side. He has been a good friend to me. I am very grateful to have such a friend,” said Harun.
It’s rare to find someone who can just do what Evans is doing to Harun, without expecting anything in return. “I just helped him, it’s important that people help each other,” Evans answered when asked about why he chose to help Harun after just meeting him on the street.
Ollier disease manifests as greater than normal growth of the cartilage in the long bones of the legs and arms so that growth is abnormal and the outer layer (cortical bone) of the bone becomes thin and more fragile. These masses of cartilage are benign (non-cancerous) tumours known as enchondromas. Enchondromas may occur at any time. In about 30% of patients, the enchondromas may undergo malignant changes to a cancer such as chondrosarcomas. Malignant transformation is more likely to occur in the long tubular and flat bones.
Harun’s body parts that are affected include feet and legs, which are partially deformed, especially the right leg. He can barely cover longer distances and because of his uncomfortability with his hands, he can barely do anything easily.
For instance, holding water to wash her hands is a mountainous task, same as brushing, writing with a pen, typing and all these kinds of tasks.
But the young man has refused to give up, saying that his main target is to get proper treatment and then move on with his big ambitions.
“My biggest wish is to get the right treatment from the right doctors so that I can live a normal life… People are inspired by the way I handle my condition, all I want is to have regular hands to be able to work for myself and my family. I am still dreaming, I have not kept my dreams down,” he young man said.