WHY ARE WE HERE?

13 years’ ago while on a 3-week work assignment with the United Nations in Nairobi, Kenya, I walked into Mama Ngina children’s home; and my life changed forever. As I entered the nursery, a bubbly one year old boy, gripping the side of his crib, called out to me.  I was magnetically drawn to him, and when he lay contentedly in my arms , it felt like a homecoming.  He was the essence of calm, self-possession, and solidity – powerfully evocative of my father who had recently passed.  It was here that I would fulfill my yearning to be a mother. The Home assured me that he was healthy; but I went through a more formal medical evaluation, preliminary to the adoption process.  And the eventual news that he had sickle cell disease punctured my new, joyous reality.

Sickle cell disease is the most common genetic disorder in the world; present on four continents.   As you may know, it is prevalent among Africans and the African diaspora - in particular, the USA, Brazil, and the Caribbean. 1 in 12 African Americans carries the trait; 1 in 500 Americans has the disease. The disease results from both parents carrying the trait. It is a disease of the red blood cells which shortens their life span and alters them to the sickle shape. Because sickle shaped red blood cells can block blood flow, oxygen is not delivered to vital organs in many parts of the body, and a number of complications can result including stroke, and a high rate of infections.  Patients suffer excruciating pain attacks, known as sickle cell pain crises which are indescribable and only respond to narcotic pain killers.  Early diagnosis is critical to saving life – since only then can the interventions be introduced without which the infants’ systems are vulnerable to deathly complications

“Shikuri – braving blood draws during admission for sickle cell pain crisis during 10-day admission at NY Presbyterian,  May 2015 in New York”

“Shikuri – braving blood draws during admission for sickle cell pain crisis during 10-day admission at NY Presbyterian,  May 2015 in New York”

 I was catapulted into this new reality.   Despite everything, I became gradually convinced that I would be responding to a higher imperative by providing him a mother’s loving care and home.  It was the defining decision of my life:  We gave each other the gift of family. Over the past 13 years, as many of you know, my son has fought several medical battles and pain bouts but thanks to developments in medical care and a vigilant mom, his prognosis is good; and he can now be a normal, exasperating teenager. After taking a work sabbatical in December 2013,  I threw my energies into exploring whether there was now an early diagnosis program in Kenya and if the health status of children with sickle cell had improved . I was unprepared for the grimstatistics on children with SCD in Kenya and indeed much of Sub Saharan Africa (SSA) . In the regions where it is prevalent the World Health Organization estimates  that 80-90 % die before the age 5 due to the lack of viable medical care and diagnosis.   Despite having been declared a public health priority in Sub Saharan Africa by WHO, most countries , do not have dedicated health delivery systems for it. Having experienced first hand my son’s pain and anguish, I was galvanized into action to try to make a difference to children beyond help’s reach.

Thus was founded the Shikuri project, named after my son, as a Charitable Trust to give children with sickle cell disease, in underserved communities, in Kenya and eventually other parts of Africa, the health care to survive.