Doctors in Nigeria’s economic nerve, Lagos in 2009 told Crystal Chigbu that her daughter Beulah had tibial hemimelia – six days after her birth.
The incidence of tibial hemimelia has been estimated to be one in one million live births, making it one of the rarest congenital lower-limb deformities seen.
The doctors advised Chigbu and her husband to get their daughter’s deformed leg amputated. For days she cried, cursing herself for giving birth to a deformed child. It took her two years and three months to act on the doctors’ advice and a year after Beulah was with a prosthetic leg.
“So, we amputated the leg when she was two years and three months,” Chigbu told NGOpodcast.
It was after the amputation of her daughter’s right leg that it dawned on her to help “many children that needed to live their lives to the fullest” but were being held back as a result of amputations they had.
That realization marked the birth of The Irede Foundation, a non-governmental organization dedicated to saving lives of children living with limb loss in Nigeria as well as being a support system for them.
“So, the organization was set up to bridge these gaps and give hope to such children and let them know that they can live their lives in spite of the amputation that they have been through,” Chigbu said.
The Irede Foundation was founded in 2012 to bring hope, joy, and purposeful living to all children living with limb loss, their families and caregivers. So far, 115 prosthetic limbs have been provided for 82 children across 17 states in Nigeria and still going on strong.
“We take them on and ensure that they live a successful or meaningful life. Usually what happens to people is that once they have been amputated as a result of one thing or the other they kind of think that life is unbearable and as a result of that they lose their peace, joy and hope that they should have and they tend not to live life to the fullest,” Chigbu said in the NGOpodcast interaction.
“So, what we basically, do is giving them hope that living life to the fullest is possible even with the amputation they had gone through. In a nutshell for us, it’s pretty yes, you were not born with a limb but you shouldn’t stay without a limb or probably even think of it like life took away your limbs from you but you should not stay without a limb and as a result of that our vision is to ensure every child live their lives to the fullest and become champions even with the limitations of amputation,” she added.
UNICEF estimates that 140 million children are living with disabilities in developing countries, a considerable portion of which are child amputees.
Most of these children by the age of five are beggars on the streets without any hope of education, employment, or even live self-sufficient lives. They face discrimination, isolation, and stigmatization, and are not able to participate in all aspects of life as the rest of their peers – a worrying occurrence Chigbu embarked to change seven years earlier through The Irede Foundation.
She told CNN back in August that the foundation’s “goal is to have over 10,000 people, basically in the next three years, talking about the inclusiveness of children that have been amputated around the world and raise champions of child amputees. It will be fantastic.”
Nigeria in January passed the Discrimination Against Persons with Disabilities Act. The law makes it a crime to discriminate against any Nigerian with any form of disability and prescribes fines and prison sentences for those who break it.
It also demands a five-year transitional period before it is compulsory for public buildings and structures to become accessible for people with disabilities.