approximately 1000 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. 0ur government did little to help us. and i'm advocating to those empowered to change that. even in our own communities, people with sickle cell are often treated like outcasts because of misconception and stigma surrounding the disease.

i'm putting my life on the line to fight this deadly disease. and to dispel the myths that surround it. sickle cell is not witchcraft. it's not ancestral curses. it's something that we can solve. gentle guitar music plays. damn! the abnormal sickle shaped red blood cells in my body affect my oxygen levels. 0ne

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, you can only push your body for a good number of days before you need to rest. i was telling people this guy has sickle cell. i've been raising awareness about the devastating impact of sickle cell on patients and families for years. we will have this conversation again. thank you. i try to help my fellow survivors. fresh vegetables for people with sickle cell like myself. and advocates to the authorities to act. it's also a way for the government, the ministry, to see that these people are a forgotten

demographic in this country and they need to set up help and support infrastructure to be able to manage their disease. 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. sisters would 'ust wake up in pain at night.— sisters would 'ust wake up in pain at night. throughout my battle with — pain at night. throughout my battle with sickle _ pain at night. throughout my battle with sickle cell, - pain at night. throughout my battle with sickle cell, my . battle with sickle cell, my brother paul has always been my rock. now, he is at my side again and i take on my biggest challenge yet. if my brother's help, i plan to fight through my illness and run the nairobi half marathon.

when it comes to sickle cell, they are encouraged against getting tired. i also knew that when she bites into something, she doesn't let go. the marathon idea came — came into my mind when i was like, "i need to do something. i need to do something to physically show that 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'm determined to do it. notjust for me. 80 million of us are full with this disease across africa. —— suffer. we have to believe. the other day, i was telling one of my sickle cell advocates in nigeria that i am doing the marathon and she was like, she was like, she was very upset. she was like, "no. no, sickle cell patients have this thing of saying they can do this. you cannot do a marathon. please, no, you cannot." 0f marathon. please, no, you cannot." of course i can. of course i can. and i will, so... i want to do that. not to show her because yes, i have a chip on my shoulder, but i want to

believe before live a normal life and want to do these things that i want to do and i want to see these things that my body can stretch to without snapping, of course. for my training, i'm going back to my hometown. tevita. 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. ijoined 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.

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. albert was one of the first people i met and he was one of the few who spoke to me. like,

the few who spoke to me. like, the passion — like, this was one of the parents i saw who did not feel the shame or the stigma of sickle cell.

i know how destructive sickle cell can be, especially in rural areas. a lot of communities, we actually link sickle cell with ancestral curses, witchcraft. this is ok, this is people forming their own stories around them. so i had to go and tell people that sickle cell is not witchcraft. it's not ancestral curses. it's

something that we can solve. but slowly, things are beginning to change. i organised a meeting, hoping the community might come out. i needn't have worried.

with the community behind us, albert and i decide to join forces and up our game.

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 realised the true scale of the problem. and how desperately the people in taveta need access to quality, affordable care. majority of people who earn less than a dollar a day or $2 a day will not sacrifice them meal or their home. to buy this expensive medicine. it's either the meal or the medicine. iam i am getting my community to

help it needs. but it is tiring work and the marathon is only four weeks away. so this is the tavern. today i was able to run but only for approximately 20 seconds, and had to stop, take a breath, relax, walk, then run again for 20 seconds, and yeah, it was... it showed how unfit i am, i am extremely unfenced, but i am working on that. 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 oldest sister succumbed to sickle cell.

magdalena. i got my passport, she was a _ magdalena. i got my passport, she was a normal— magdalena. i got my passport, she was a normal child - magdalena. i got my passport, she was a normal child until. she was a normal child until she was a normal child until she was a normal child until she was three years when we discovered that she was sick, and it never occurred to me that it was sickle cell. we took the temperature, and the temperature was very high, and she did not wake up and she passed away. she did not wake up and she passed away-— she did not wake up and she passed away. she did not wake up and she assed awa . , , ., ., passed away. the sister who are lost, i passed away. the sister who are lost. i never— passed away. the sister who are lost, i never met _ passed away. the sister who are lost, i never met her. _ passed away. the sister who are lost, i never met her. she - passed away. the sister who are lost, i never met her. she died i lost, i never met her. she died before — lost, i never met her. she died before i— lost, i never met her. she died before i was born. this is the

way, — before i was born. this is the way. sickle _ before i was born. this is the way, sickle cell isjust the way— way, sickle cell isjust the way we _ way, sickle cell isjust the way we live. it affected my parents. _ way we live. it affected my parents, my sisters, i could see — parents, my sisters, i could see that _ parents, my sisters, i could see that kind of environment. sickle — see that kind of environment. 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 what i am doing the marathon, essentially i will be reducing the oxygen circulating to my body, the functionality of my organs, and risking things like strokes, orsomething organs, and risking things like strokes, or something is obstructed somewhere and ijust collapse, and yeah. as the day

approaches i'm excited and determined.— determined. ladies and gentlemen, _ determined. ladies and gentlemen, i'd - determined. ladies and gentlemen, i'd like - determined. ladies and gentlemen, i'd like to l determined. ladies and - gentlemen, i'd like to welcome you to the 2018 nairobi international marathon! i’m international marathon! i'm feelin: international marathon! i'm feeling good _ international marathon! i'm feeling good at _ international marathon! i'm feeling good at the starting line. the adrenaline kicks in and i'm all set. (cheering)! after two _ and i'm all set. (cheering)! after two kilometres, - and i'm all set. (cheering)! after two kilometres, my - and i'm all set. (cheering)! i after two kilometres, my body starts to give out. the sun is so hot, my breathing becomes labour to. so hot, my breathing becomes labourto. ifeel like so hot, my breathing becomes labour to. ifeel like i have changed to a boiler. 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. ifelt finish line my body simply gave out. i felt faint, finish line my body simply gave out. ifelt faint, ijust could not catch my breath, this was

everything my doctor and friends had warned me about. 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 is nothing on earth that can stop me. i head back to taveta with an renewed energy! i am determined to get sickle cell patients and families the support they deserve and i decide to confront a member of county assembly.

the governor promises his support and i speak to as many officials as i can, hoping to drum up support officials as i can, hoping to drum up sunpofl— officials as i can, hoping to drum up support what is your mission? _ drum up support what is your mission? my _ drum up support what is your mission? my mission - drum up support what is your mission? my mission is - drum up support what is your. mission? my mission is quality access for— mission? my mission is quality access for care, _ mission? my mission is quality access for care, for _ mission? my mission is quality access for care, for the - mission? my mission is quality access for care, for the county | access for care, for the county to create an enabling environment so people can come to these facilities. i'm looking for positive health outcomes. finally, after yea rs of finally, after years of advocating, a special clinic

for sickle cell patients is unveiled. all the battles, all the obstacles, finally we are here. how many sickle cell clinics are in taveta, and having you all come together for the entire country is not a force to joke with. having passed through this trouble, these people here showed me that we're not alone. i am not alone, 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. thank you so much. for me, this new clinic isjust 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'rejust just in kenya, but all over africa. we're just getting started, this is a marathon. it is not the one who is the winner who runs the furthest, or who runs the fastest will be in, this is a relay race, and me, i know that i realise that this problem, i will not solve its entirety in my lifetime,

and the person coming after me will be, will have it easier and be able to take it even further. it's a beautiful morning in taveta, kenya, and we are doing ten kilometres with my mum, she is running ahead, so we will be doing ten, ten, so 20 kilometres today, and i'm so excited! look at that sunrise! it has been a rainy experience, we are all

wet! the weather here is like it was dipped in water! never felt so much rain in my life, and that was an amazing experience! so tired, we have just finally finished ten kilometres, and now we are doing ten more.

hello there. after what we had on friday it's hard to believe that this june could be the warmest on record. across north yorkshire temperatures were around 16 degrees in afternoon, some other parts of the country were colder still. we will find more sunshine over the weekend the start ofjuly in this clearest slot with the thicker lower cloud moving away, taking the rain away as well, we will be left with a north—south split with sunnier, warmer weather in the south, the showers continuing further north and we will have stronger winds as well. it could be a cloudy start for many but we will see the showers in the midlands, the southeast moving away, sunny skies developing in the south but sunshine and showers will continue in northern ireland, scotland, and northern england, frequent showers in the north and west of scotland where it will be quite windy, it may feel rather chilly but we could make 18 degrees, 23 or 2a in the south, so a bit

warmer than it was on friday. for the cricketers, there could be one or two showers left over for the start of play otherwise it looks like it will be a dry, with some sunshine, a bit breezy out there, mind you, and the winds are coming back all the way from iceland and greenland so it will never be particularly warm and that low pressure sitting close to scotland will keep it windy and wet in the far north of the mainland. more showers to come on sunday across other parts of scotland, the odd one continuing in northern ireland and england but for wales and the midlands, southern england, it should be a dry day, plenty of sunshine here. the winds may not be quite as strong on sunday but if anything, those temperatures could actually be a degree or so lower. heading into the beginning of the new week and that low pressure heading towards scandinavia keeps windy weather going across scotland, that weather front continuing to feed rain into northern scotland, more showers coming into the rest of the country, and while england and wales may start dry, we could see some showery rain moving in from the west and that could arrive later on in the day.

sw19 for the start of wimbledon where temperatures will be around 21 degrees, so not a particularly warm start to the week ahead. it will take a while for the temperatures to rise and they may not rise a great deal mind you, and it is still unsettled over the week ahead with showers and longer spells of rain particularly in the north and the west.

live from washington, this is bbc news. as the supreme court curtails lgbtq protections in a landmark case, bbc news takes a closer look at restrictions and challenges facing the transgender community in the us. and bans on trans athletes competing in gender—specific sports are on the rise. we speak to a lawmaker who proposed one of those bills. hello, i'm sumi somaskanda. hello, i'm sumi somaskanda. it's the end of pride month it's the end of pride month here in the united states, here in the united states, which comes at a challenging which comes at a challenging time for many members time for many members