TALES OF COURAGE: I wish I could carry my son's pain for him

Bob Kevin,15, who has lived with sickle cell disease since he was nine months old sits on his mother Irene Lambada's laps. He is forced to live with the helmet to support him in walking and to prevent him from hurting his head when he convulses. PHOTO| WINNIE ATIENO

What you need to know:

  • However, his condition worsened after his bones became painful and he could neither stand nor walk.  He fed using tubes.
  • At three years, she realised her son had developed another ailment known as osteomyelitis. It is an infection of the bones, a rare but serious condition.
  • “He used to be transfused two pints of blood every day, at times three or five, depending on his condition. At five years he was in a coma for 14 days. He was depending on oxygen, it was the lowest moment of my life,” says the single mother.
  • Do you have feedback on this story? E-mail: [email protected]

Bob Kevin’s mother fled from her village in Migori when he was born because villagers accused her son of being bewitched and therefore a bad omen.

“I could not stand the humiliation and finger-pointing so I simply left,” says Irene Lambada.

Bob, 15, was diagnosed with sickle cell disease when he was nine months old.

Irene says she gave birth to twins at Ombo Mission Hospital in Migori.

“He was the first child I gave birth to. I had to be operated for his sister to be born. He was never sick but at nine months old, he developed the strange sickness. I was told he didn’t have enough blood,” she says.

BLOOD TRANSFUSIONS

When he was a year old, he had to be transfused with five pints of blood.

“I then realised that my son could be suffering from sickle cell. I asked the doctor to test his blood but he said my son was healthy. But I went to a private laboratory and had the test. It was established his cells were sickled, they were not normal,” adds Irene.

Bob, 15, was diagnosed with sickle cell disease when he was nine months old. He is pictured here with his kindergarten teacher. PHOTO| WINNIE ATIENO

Every week, Irene would visit slaughter houses in Migori to fetch cattle blood, which she fed her son in the hope that it would boost his iron levels.

“I would dry, grind it and feed my baby with the blood mixed with porridge. One day, I met a doctor in Machage Memorial Hospital who introduced my son to proper sickle cell treatment.”

However, his condition worsened after his bones became painful and he could neither stand nor walk.  He fed using tubes.

At three years, she realised her son had developed another ailment known as osteomyelitis. It is an infection of the bones, a rare but serious condition.

“He used to be transfused two pints of blood every day, at times three or five, depending on his condition. At five years he was in a coma for 14 days. He was depending on oxygen, it was the lowest moment of my life,” says the single mother.

REGAINED CONSCIOUSNESS

“Miraculously, he regained consciousness. I knew God had healed him. But suddenly, he became pale and lost consciousness. He slipped into another coma, this time, his brain was dead.”

She feared for the worst, but after seven days Kevin woke up again.

Doctors thought he might die so he was referred to Kenyatta National and Russia hospitals.

“I opted for Russia in Kisumu. I stayed in the hospital for 11 months. He was given a wheelchair because his bones couldn’t sustain the pain of walking.

When the situation became worse, Irene would threaten the health workers that she would abandon the child and flee. She started questioning God.

She later sold her business in Nairobi to offset her son’s medical bills.

BECAME EPILEPTIC

At six years, Kevin became epileptic.

“We were discharged and I travelled to Mombasa and started treatment at Coast General Provincial Hospital (CPGH) after doctors advised me to live in a warm area. I dedicated my whole life to my son.”

Because her ailing son depended on her for round-the-clock care, she couldn’t hold a job.

At CPGH, she met a doctor who advised her to take her son to Sahajanad Special School in Mtwapa.

It is the only home Kevin has known to date.

“He survives through blood transfusions and medication. Sickle cell has caused massive side effects on him and doctors advised me to take him to India because his condition is worsening.”

Seeing her son’s health deteriorating speedily causes her great pain.

He is forced to wear a helmet to protect his swollen head due to his numerous convulsions.

At 15, Kevin is still in kindergarten due to his poor health. His teachers shower praises on him, saying he is a jovial student.

Bob Kevin and his mother Irene. PHOTO| WINNIE ATIENO

“If he is excited he convulses, if he is sad the same scenario overwhelms him. I just want my son’s life to be like his twin sister. I am afraid if I die he won’t have anyone to take care of him.”

DEVELOPED MENTAL ILLNESS

“He developed mental illness so he had to wear a helmet because he falls down often after suffering from epilepsy and his heart is also enlarged. Doctors said if he is taken to India, specialists there may be able to treat the condition. It will cost Sh8 million. I don’t have that kind of money.”

Bob needs a total hip replacement and bone marrow transplant and brain management to reduce convulsions.

His sister, a Form Three student, agreed to become his bone marrow donor for the replacement.

Do you have feedback on this story? E-mail: [email protected]

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Editor's Note: The last paragraph in the article has been revised to clarify that Bob's sister will be his bone marrow donor and not hip donor as earlier indicated.