♪ narrator: funding for this presentation of this program is provided by... woman: architect. bee keeper.

mentor. a raymond james financial advisor tailors advice to help you live your life. life well planned. george: actually, you don't need vision to do most things in life. it's exciting to be part of a team driving the technology forward. i think that's theost 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 america's neglected needs. announcer: and now, "bbc news". lea: my name is lea. i may lookike a normal 20-something.

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 i'm 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: i'm putting my life on the line to fight this deadly disease. anto 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, sickle-shaped red blood cells in my body

affect my oxygen levels. one of the biggest problems with sickle cell is oxygen. like if you don't have sufficient oxygen, so you can only push your body fat for a good number of days before you need to really rest. now he's telling people, "this girl h sickle cell," and they don't even know i have sickle cell. i've 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 we'll 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. it's 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 help 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 he's at my side again and i take on my biggest challenge yet. lea: with my brother's help, i plan to fight through my illness and run the nairobi half marathon.

paul: when it comes to sickle cell, they're encouraged against getting tired. ah, nice. i also knew that when she bites into something, she doesn't 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 she 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 want to 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, i'm going back to my hometown, taveta. it's 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 hospital to 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 stigm 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, it's not ancestral curses. it's 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 needn't 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 bu this expensive medicine. it's either the meal or the medicine. i'm 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 it'll just collapse, and yeah. as the day approaches, i'm excited and determined. announcer: ladies and gentlemen, we would like to welcome you to the 2018 standard chartered nairobi international marathon. lea: i'm feeling good at the starting line. the adrenaline kicks in and i'm all set. woo! (gunshot).

(cheering and applause). after two kilometers, my body starts to give out. the sun is so hot, my breathing becomes labored. i feel like i'm chained to a boulder. man, i have to keep going. my brother and friend both rush to support me but i can't 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 everything my 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, there's nothing on earth that can stop me.

i head back to taveta with a renewed energy. i'm 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: you're 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, yoknow, will have it easier and be able to take it even further. it's a beautiful morning in taveta, kenya and we are doing 10 kilometers to holili with my mom she's right ahead, she's a runner, and yes so,

we'll be doing 10/10, so 20 kilometers today. so i'm so excited guys look at that sunrise. ♪ ♪ so it has been a rainy experience we are all wet. our brother here, it's like he was dipped in water. (speaking in native language). mom: a swimming pool! (laughs). oh my. i've never felt so much rain in my life and that was an amazing experience. and um, yeah, i'm so tired. we've just finally finished 10 kilometers now,

oh my god, we are doing ten more. (music playing through credits). ♪ narrator: funding for this presentation of th 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 america's neglected needs. ♪ ♪

wow, you get to watch all your favorite stuff. it's to die for. now you won't miss a thing. this is the way. the xfinity 10g network. made for streaming. geoff: good evening. i'm geoff bennett. amna: and i'm amna nawaz. on "the newshour" tonight. arizona's supreme court upholds a civil war-era abortion law, effectively banning the procedure in the state. geoff: congressman mike johnson fights to remain house speaker among a divided republican party. amna: and reconciliation and rebuilding in rwanda 30 years