Narrator funding for this presentation of this program is provided by. Woman architect. Bee keeper. Mentor. A Raymond JamesFinancial Advisor tailors advice to help you live your life. Life well planned. George actually, you dont need vision to do most things in life. Its exciting to be part of a team driving the technology forward. I think thats the most rewarding thing. People who know, know bdo. Narrator funding was also provided by, the freeman foundation. And by judy and Peter Blum Kovler foundation; pursuing solutions for americas neglected needs. Announcer and now, bbc news. Lea my name is lea. I may look like a normal 20something. But my life is often consumed by illness. Lea approximately 1,000 people are born every day in africa with sickle cell. I have sickle cell disease. Up to 90 of us die before the age of five. Our governments do little to help us. Lea and im advocating to those in power to change that. Lea even in our own communities, people with sickle cell are often treated like outcasts because of the misconception and stigma surrounding the disease. Lea im putting my life on the line to fight this deadly disease. And to dispel the myths that surround it. Lea over phone hi, beautiful people, this is lea, you can see my jaundice it is on, damn. The abnormal, sickleshaped red blood cells in my body affect my oxygen levels. One of the biggest problems with sickle cell is oxygen. Like if you dont have sufficient oxygen, so you can only push your body fat for a good number of days before you need to really rest. Now hes telling people, this girl has sickle cell, and they dont even know i have sickle cell. Ive been raising awareness about the devastating impact of sickle cell on patients and families for years. Some of us have accepted sickle cell. And subscribe. And well have this conversation again. Thank you. I try to help my fellow survivors. Fresh green, leafy vegetables for People Living with sickle cell, like myself. And advocate to the authorities to act. Its also a way for the government, the ministry, to see that these people are forgotten demographic in this country and they need to set up lp and support infrastructure to be able to manage the disease. Paul when i was younger, i never knew what sickle cell was. I just knew, like, sometimes my sisters would just wake up in pain at night. Lea throughout my battle with sickle cell, my brother paul has always been my rock. Now hes at my side again and i take on my biggest challenge yet. Lea with my brothers help, i plan to fight through my illness and run the nairobi half marathon. Paul when it comes to sickle cell, theyre encouraged against getting tired. Ah, nice. I also knew that when she bites into something, she doesnt let go. speaking in native language . Lea the marathon idea came, came into my mind when i was like, i need to do something. I need to do something to, to physically show that i can, i can do it like someone with sickle cell can do it. My doctor has cautioned against running the marathon. It could trigger a crisis and bring on severe complications. But i am determined to do it, not just for me. 80 million of us suffer with this disease across africa. We have to believe. The other day was telling one of my sickle cell advocates in nigeria that i am doing the marathon. But she was like s was like she was very, very upset. She was like, no, no, sickle cell patients have this thing of saying they can do this. You cannot do a marathon, lea, please, you cannot. So of course i can, of course i can, and i will. So yeah, i want to do that, not to show her because yes, i have a chip on my shoulder but, i wanto live a normal life. I want to do these things that i want to do. I want to see where my body can, can, can stretch to, yeah, without snapping, of course. For my training, im going back to my hometown, taveta. Its also the place where i think i can make the biggest difference for thousands of People Living with the disease. In taveta, almost a quarter of the population have the sickle cell gene, but those living with the disease receive very little support. speaking in native language . I join a local group as they prepare to march on a nearby hospital and demand Better Services for sickle cell patients. We go to the local hospitalo protest. Lea albert is the leader of this group. Like so many other parents of children with sickle cell, he has suffered from the stigma and poverty that surrounds the disease. But he is determined to find a solution. singing in native language singing in native language albert was one of the first people i met, and he was one of the few who really spoke to me. Like the passion, like this was one of the parents that i saw who did not feel the shame or the stigma of sickle cell. singing in native language lea i know how destructive the myths surrounding sickle cell can be, especially in rural areas. A lot of communities we attribute sickle cell to ancestral curses, witchcraft. This is okay. This is a situation for any unknown thing in a community. People form their own stories around them. So i had to go and tell people that sickle cell is, is not, witchcraft is not, its not ancestral curses. Its something that we can solve. speaking in native language . But slowly things are beginning to change. I organized a meeting hoping the community might come out. I neednt have worried. birds chirping . speaking in native language . speaking in native language . Lea with the Community Behind us, albert and i decide to join forces and up our game. Lea albert and i scour the community, finding more and more people that have sickle cell in their families. Many of them in dire need of medicine. I soon realized the true scale of the problem and how desperately that people in taveta need access to quality, affordable care. Majority of people who earn less than 1 a day or 2 a day will not sacrifice the meal of the home to buy this expensive medicine. Its either the meal or the medicine. Im getting my community the help it needs, but it is tiring work and the marathon is only four weeks away. So this is the terrain today i was able to run, but i ran for approximately 20 seconds and i had to stop, take a breath, relax, walk, then run again for 20 seconds. And yeah, it was, it showed how unfit i am, like i am extremely unfit, but i am working on that. speaking in native language . My family has always been there to help me through my most difficult times, but they too have their challenges. All my sisters have sickle cell. My older sister magdalein succumbed to sickle cell. Paul the sister who i lost, i never met her. She died before i was born. Based on the way sickle cell and just the way we live. You know how it affected my parents, my sisters. I could see that that created like a kind of environment. Lea sickle cell has made me and my family stronger. But as i prepare for the marathon, the warnings from my doctor keep playing on my mind. The doctors disagree with me about my doing the marathon. Essentially, i will be reducing the oxygen supply in my body, the functionally of my organs, and risking things like strokes or now retinopathy or like something just obstruct somewhere and itll just collapse, and yeah. As the day approaches, im excited and determined. Announcer ladies and gentlemen, we would like to welcome you to the 2018 Standard CharteredNairobi International marathon. Lea im feeling good at the starting line. The adrenaline kicks in and im all set. Woo gunshot . cheering and applause . After two kilometers, my body starts to give out. The n is so hot, my breathing becomes labored. I feel like im chained to a boulder. Man, i have to keep going. My brother and friend both rush to support me but i cant give up now. I have to reach the end. I tapped into my energy deep down. And somehow managed to push through. But as i crossed the finish line, my body simply gave out. I felt faint. I just could not catch my breath. This was everythinmy doctor and friends had warned me about. speaking in native language . The end of the marathon was scary and could have cost me my life. But it showed me that once i set my mind on something, theres nothing on earth that can stop me. I head back to taveta with a renewed energy. Im determined to get sickle cell patients and families the support they deserve and decide to confront our member of county assembly. The governor promises his support. And i speak to as many officials as i can, hoping to drum up support for a specialist center. Thank you so much, mama. Woman youre welcome. Lea bye. Woman bye. Lea finally, after years of advocating a special clinic for sickle cell patients in taveta is unveiled. cheering . speaking in native language . All the battles, all the obstacles, finally, we are here. cheering . Having a sickle cell clinic in taita taveta is no easy feat and having all of you come together for the entire country is not a force to joke with. applause . Yeah. Having passed through this struggle with us now feel us. These people here show me that we are not alone. I am not alone. We are not walking alone. We are creating this path however long it will take. However, hard the struggle, the lives lost, maybe some of us will not be here to see the future, but we must walk. Okay . Thank you so much. applause . For me, this new clinic is just the beginning of my mission to improve the lives of all sickle cell patients and families, not just in kenya, but all over africa. We are just getting started, this is not a marathon. laughs . It is it is not one who, who is, who is the winner, who runs the farthest, or who runs the fastest will win. This is a relay race. And me, i know that i realize that this problem i will not solve its entirety in my lifetime and the person coming after me will be, you know, will have it easier and be able to take it even further. Its a beautiful morning in taveta, kenya and we are doing 10 kilometers to holili with my mom shes right ahead, shes a runner, and yes so, well be doing 10 , so 20 kilometers today. So im so excited guys look at that sunrise. So it has been a rainy experience we are all wet. Our brother here, its like he was dipped in water. speaking in native language . Mom a Swimming Pool laughs . Oh my. Ive never felt so much rain in my life and that was an amazing experience. And um, yeah, im so tired. Weve just finally finished 10 kimeters now, oh my god, we are doing ten more. music playing through credits . Narrator funding for this presentation of this program is provided by. Narrator Financial Services firm, Raymond James. Man bdo. Accountants and advisors. Narrator funding was also provided by, the freeman foundation. And by judy and Peter Blum Kovler foundation; pursuing solutions for americas neglected needs. Wow, you get to watch all your favorite stuff. Its to die for. Now you wont miss a thing. This is the way. The xfinity 10g network. Made for streaming. Question anything. Jeff on the news hour tonight. Opening statements. In the class of former from over alleged hushon