Santhosh Mathews, founder of A Love without Reason at Garissa Level 5 Hospital /STEPHEN ASTARIKO
When Santhosh Mathews and his wife bore a child with disability in July 2000, many people stigmatised him and called him a curse. This is despite living in one of the most developed countries in the world, the US. \
Santhosh’s son was born with a cleft lip and palate, holes in his heart, and he did not have ears as well. Cleft lip and palate is a birth defect that occurs when a baby’s lip or mouth does not form properly during pregnancy.
This condition can vary in severity but can generally be treated with surgery and other interventions. Santhosh’s son’s death in 2019 sparked an urge in him to start an organisation, Love Without A Reason, to help children with cleft lips.
The organisation conducts free cleft lip and palate surgeries across the world.
“When my son was born with a cleft lip palate, the immediate reaction from neighbours and relatives was the child is a curse or that he was born during a solar eclipse or a lunar eclipse while others said he was a child of a rebel god,” Santhosh said.
“When doctors examined him, they said they could not find any genetic reason or any other issue for the condition. The best part is the cleft lip could be fixed and their smiles restored.”
He spoke during an interview at the Garissa Level 5 County Referral Hospital during a free medical camp. Forty cleft lip surgeries were conducted during the three-day medical camp. The cost of cleft lip surgery in Kenya ranges between Sh250,000 and Sh300,000.
“It is every parent’s hope, desire and prayer to wish their children to be born with the right weight, sound mind and good physical health,” he said.
Santhosh urged parents and communities to stop stigma against children born with disability as they have a right to life and other basic needs.
“Nothing prepared us to welcome a child with disability. While many parents still hold their children with love and resilience, some feel a sense of disappointment and question why out of the billions of humans in the world, only them have to undergo such,” he said.
The US citizen said many children have been hidden from society, denied education and jobs and many of them have not had an opportunity to get married and start their own families.
“Sometimes because of stigma, many parents stop loving their child; sometimes the schools do not accept these children or when accepted, they are bullied. My advice as a parent who had a child with a disability is to love them children unconditionally,” he said.
According to Santhosh his son was a blessing as his condition made him see the need to mobilise resources to help other children.
“When my child was born, people
called him a curse but today, many
people have received free surgeries
because of him,” he said.
