The evening air in Nairobi is cool and crisp, and a chorus of frogs are singing as I walk back to my room, traversing a beautiful stone walkway through the lush hotel courtyard. One frog sounds like a frantic woodpecker on a hollow log, while others sound like little cell phone alarms. While I walk, I relfect on a remarkable day; World Hemophilia Day, in Kenya.
I arrived just 24 hours ago, and already feel like so much has happened. After 19 hours in transit, I arrived in Nairobi, Kanya’s capital, to be greeted by Maureen Nyangwara, mother of a child with hemophilia, her husband Sitawa, and two board members of the Jose Memorial Hemophilia Society, a new patient group. Maureen and I hugged like long separated sisters: we have kept in constant contact for almost two years, since her little Joseph died while in intensive care from nasal bleeding. This tragic loss was a catalyst for Maureen to take action, to try to ensure that no child die needlessly from bleeding in Kenya. She formed her nonprofit as a primary place for parents to feel heard, empowered and home. And today Kenya celebrated its first World Hemophilia Day!
The meeting took place at MP Shah Hospital, a private hospital that welcomes hemophilia patients. After touring the hospital, we arrived at the conference room, which began to fill with patients and staff. Soon there were about 60 people in attendance. Today would be the official launch of the JMHS. There were moving speeches by the MP Shah CEO and the Ministry of Health representative. Dr. Dave, the MP Shah’s hematologist and medical advisory board member, pledged to continue support to the patients and families. I spoke about the need for action by the parents: one or two families cannot carry the work that needs to be done by all. Though Maureen and I both founded our organizations after reaching a point of no return, I stressed that other families do not have to wait until they are in a crisis or pain to come to the Society and ask for hep or to offer help–come now! The Society needs their help and welcomes their ideas. I shared photos and stories from around the world, about how other countries with far less than Kenya successfully accomplished goals and improved care. Often, all it takes is one dedicated doctor and one dedicated parent or patient to move mountains.
Maureen then spoke about how Jose’s death changed her life, and how she will now work to bring better care to all. James , a spry 43 year old, spoke eloquently and passionately about what people with hemophilia can do–the emphasis of the day was Yes we can!
Later we visited the MP Shah hematology ward, where a beautiful new plaque proclaimed the inauguration. I was shocked and honored to find my name on the plague. I was then offered scissors to cut the ribbon to the new HTC center! And while we donate factor to Kenya from time to time, it’s the Kenyans who have done all the work, especially today. The day belonged to them, a celebration of loss, hope, and a compelling future when there will be factor for all. Not a bad start to this journey!