1 00:00:01,599 --> 00:00:03,199 For the first four years, I did not 2 00:00:03,199 --> 00:00:05,679 know another human being with hemophilia or a 3 00:00:05,679 --> 00:00:07,759 parent like me. I wish I had that 4 00:00:07,759 --> 00:00:10,019 community and that was my motivation. 5 00:00:13,039 --> 00:00:15,234 Welcome to where hope begins the Save One 6 00:00:15,234 --> 00:00:18,035 Life podcast, one country, one community, and one 7 00:00:18,035 --> 00:00:19,714 life at a time. I'm your host Kai. 8 00:00:19,714 --> 00:00:21,714 And today, we're joined by Maureen Maruca, the 9 00:00:21,714 --> 00:00:24,515 founder of the Jose Memorial Hemophilia Society of 10 00:00:24,515 --> 00:00:26,755 Kenya, a leader whose story is rooted in 11 00:00:26,755 --> 00:00:28,980 love, loss, and a decision to build a 12 00:00:28,980 --> 00:00:31,539 community of care, advocacy, and hope for families 13 00:00:31,539 --> 00:00:33,640 living with bleeding disorders in Kenya. 14 00:00:34,100 --> 00:00:36,439 Welcome to the podcast, Maureen. Thank you, Kai. 15 00:00:36,579 --> 00:00:39,219 Yeah. Looking forward to it. Absolutely. Let's just 16 00:00:39,219 --> 00:00:41,414 start out by telling our listeners who are 17 00:00:41,414 --> 00:00:43,495 hearing from you for the first time, what's 18 00:00:43,495 --> 00:00:45,815 your story and who's Jose? Who was Jose 19 00:00:45,815 --> 00:00:47,655 to you? Great. Maybe I'll start with the 20 00:00:47,655 --> 00:00:48,395 last question, 21 00:00:48,935 --> 00:00:50,375 that Jose and by the way, in Kenya, 22 00:00:50,375 --> 00:00:52,935 we tend to say Jose rather than Jose, 23 00:00:52,935 --> 00:00:55,094 but being in Mexico again, so that is 24 00:00:55,094 --> 00:00:57,130 mixed up a bit for me anyway. So 25 00:00:57,130 --> 00:01:00,170 Jose was my son who I lost to 26 00:01:00,170 --> 00:01:00,670 hemophilia 27 00:01:01,289 --> 00:01:03,549 when he was six years of age in 28 00:01:03,609 --> 00:01:04,989 2007. 29 00:01:05,049 --> 00:01:07,150 He was just shy of his sixth 30 00:01:07,530 --> 00:01:11,304 birthday and just our experiences through his short 31 00:01:11,304 --> 00:01:14,685 life and, and, passing on, while the motivation 32 00:01:14,825 --> 00:01:15,484 for beginning, 33 00:01:15,784 --> 00:01:17,804 the society at that time, I was very 34 00:01:17,944 --> 00:01:20,825 clear about just letting his death not be 35 00:01:20,825 --> 00:01:21,564 in vain. 36 00:01:22,010 --> 00:01:22,590 So I'm 37 00:01:23,049 --> 00:01:25,790 also Ethan's mother. Ethan is 18 38 00:01:26,329 --> 00:01:28,270 next month. He also has hemophilia 39 00:01:28,650 --> 00:01:30,510 A. I am a gender scientist 40 00:01:31,130 --> 00:01:34,170 and specialist. I work for the International Center 41 00:01:34,170 --> 00:01:36,030 for Maize and Wheat Research 42 00:01:36,405 --> 00:01:37,944 based out of Mexico. 43 00:01:39,045 --> 00:01:41,284 And then what I do, of course, with 44 00:01:41,284 --> 00:01:42,665 the Hemophilia Society 45 00:01:43,045 --> 00:01:43,944 is to be, 46 00:01:44,564 --> 00:01:46,805 to provide that leadership and that means founder, 47 00:01:46,805 --> 00:01:49,290 as you've already mentioned. Well, thank you for 48 00:01:49,290 --> 00:01:51,629 sharing, and so sorry for your loss. And 49 00:01:51,769 --> 00:01:53,369 I guess going back to those early days 50 00:01:53,369 --> 00:01:56,009 with Jose, what was life like when you 51 00:01:56,009 --> 00:01:58,109 were first trying to understand what was happening? 52 00:01:58,329 --> 00:02:00,250 Yeah. So, you know, what happened one time, 53 00:02:00,250 --> 00:02:02,030 actually, Jose makes his 54 00:02:02,405 --> 00:02:03,944 finger, he was about, 55 00:02:04,564 --> 00:02:06,424 you know, nine months of age and, 56 00:02:07,125 --> 00:02:08,424 it would not stop 57 00:02:08,805 --> 00:02:11,305 bleeding. And we went and saw a pediatrician. 58 00:02:11,525 --> 00:02:13,925 Then I lived in upcountry in a place 59 00:02:13,925 --> 00:02:15,305 in Kenya called Kisii, 60 00:02:15,810 --> 00:02:17,569 which is where I was born and, brought 61 00:02:17,569 --> 00:02:19,890 up. And the doctor thought that amount and 62 00:02:19,890 --> 00:02:23,330 length of bleeding was rather curious. But before 63 00:02:23,330 --> 00:02:25,490 that he had had a few bumps, you 64 00:02:25,490 --> 00:02:26,550 know, in his body 65 00:02:26,930 --> 00:02:28,849 and checking with the doctor, they were like, 66 00:02:28,849 --> 00:02:30,955 maybe because that was a malaria, it is 67 00:02:30,955 --> 00:02:32,334 a malaria prone area. 68 00:02:32,794 --> 00:02:34,634 Maybe this is a common reaction that we 69 00:02:34,634 --> 00:02:36,794 see on sulfur based drugs that we treat 70 00:02:36,794 --> 00:02:38,955 malaria on. Maybe it's an allergy to eggs. 71 00:02:38,955 --> 00:02:41,034 And we went through all of that. And 72 00:02:41,034 --> 00:02:42,875 that's, of course, when he like, like all 73 00:02:42,875 --> 00:02:45,375 children, when they start crawling at around six 74 00:02:45,419 --> 00:02:46,939 or so months of age, and you see 75 00:02:46,939 --> 00:02:49,259 these bruises and bumps. And then another time, 76 00:02:49,259 --> 00:02:52,400 he beat himself while breastfeeding. I did breastfeeding 77 00:02:52,459 --> 00:02:54,459 for a long time, and the bleeding would 78 00:02:54,459 --> 00:02:56,800 not stop. And so the doctor was like, 79 00:02:56,939 --> 00:02:59,180 this looks like hemophilia. You need to get 80 00:02:59,180 --> 00:03:00,824 into a bus. You know, back in the 81 00:03:00,824 --> 00:03:01,965 day, that was about 82 00:03:02,584 --> 00:03:04,344 seven, eight hours on the road, and go 83 00:03:04,344 --> 00:03:06,444 to Nairobi and try to get it diagnosed. 84 00:03:06,584 --> 00:03:07,965 So, of course, we 85 00:03:08,264 --> 00:03:11,305 arrived in Nairobi with blood all over. He's 86 00:03:11,305 --> 00:03:12,444 still, you know, 87 00:03:12,879 --> 00:03:15,439 breastfeeding. He was already so low on on 88 00:03:15,439 --> 00:03:17,919 on blood and iron and got admitted into 89 00:03:17,919 --> 00:03:20,639 hospital. And that's when a very difficult journey 90 00:03:20,639 --> 00:03:23,759 of diagnosing the condition started because back in 91 00:03:23,759 --> 00:03:25,520 the day, they did not even have the 92 00:03:25,520 --> 00:03:27,360 reagents unless they were teaching the course at 93 00:03:27,360 --> 00:03:29,574 the university for testing. So we had 94 00:03:29,875 --> 00:03:32,355 to get samples around three times, which got 95 00:03:32,355 --> 00:03:33,094 messed up, 96 00:03:33,474 --> 00:03:35,235 to be sent out of the country for 97 00:03:35,235 --> 00:03:36,935 testing before he was finally, 98 00:03:37,635 --> 00:03:38,935 diagnosed with hemophilia. 99 00:03:39,235 --> 00:03:41,235 So just looking at that first of all, 100 00:03:41,235 --> 00:03:43,000 you wish that there was care close to 101 00:03:43,000 --> 00:03:44,520 where we were, that we were, we did 102 00:03:44,520 --> 00:03:46,120 not have to take long bus rides, which 103 00:03:46,120 --> 00:03:47,800 some people still do by the way, to 104 00:03:47,800 --> 00:03:49,800 go for treatment. We wish that there was 105 00:03:49,800 --> 00:03:51,260 a earlier and easier 106 00:03:51,560 --> 00:03:54,460 diagnosis, which to a certain extent is still 107 00:03:54,520 --> 00:03:56,620 true of the situation in Kenya and, and, 108 00:03:57,000 --> 00:03:57,240 and, 109 00:03:58,694 --> 00:04:01,294 and, and in developing countries. And then for 110 00:04:01,294 --> 00:04:02,894 the first four years, I did not know 111 00:04:02,894 --> 00:04:05,455 another human being with hemophilia or a parent 112 00:04:05,455 --> 00:04:07,314 like me, knowing that it was a very, 113 00:04:07,694 --> 00:04:09,534 it is a very rare condition. One in 114 00:04:09,534 --> 00:04:11,879 ten thousand boys. I wish I had that 115 00:04:11,879 --> 00:04:14,060 community and that was my motivation 116 00:04:14,360 --> 00:04:16,920 for beginning the society, just to find that 117 00:04:16,920 --> 00:04:19,100 community in the first place. Yeah. 118 00:04:19,560 --> 00:04:21,800 And again, the story is so familiar. The 119 00:04:21,800 --> 00:04:23,980 very long bus ride to find care, 120 00:04:24,404 --> 00:04:26,824 the lack of community in those early days, 121 00:04:27,285 --> 00:04:30,245 with the diagnosis, and really, I guess, how 122 00:04:30,245 --> 00:04:32,805 you turned grief into purpose. So I guess 123 00:04:32,805 --> 00:04:34,725 tell us a little bit about how you 124 00:04:34,725 --> 00:04:35,944 ended up founding, 125 00:04:36,645 --> 00:04:40,029 the Jose Memorial Hemophilia Society of Kenya. What 126 00:04:40,029 --> 00:04:41,550 was like the very first thing you did? 127 00:04:41,550 --> 00:04:43,810 Yeah. So what I have described then became, 128 00:04:43,870 --> 00:04:45,949 you know, my life in terms of living 129 00:04:45,949 --> 00:04:48,209 upcountry, going into the city for treatment. 130 00:04:48,669 --> 00:04:50,589 And I began to feel that something needs 131 00:04:50,589 --> 00:04:53,169 to give, something needs to shift over here. 132 00:04:53,694 --> 00:04:55,055 And one of the times when I had 133 00:04:55,055 --> 00:04:57,394 gone to the Kenyatta National Hospital for treatment, 134 00:04:57,535 --> 00:04:59,935 I met one of the doctors there introduced 135 00:04:59,935 --> 00:05:01,855 me and said, there is another lady here 136 00:05:01,855 --> 00:05:03,875 who also has a child with hemophilia. 137 00:05:04,415 --> 00:05:05,394 There was a Kenyatta, 138 00:05:05,774 --> 00:05:08,095 hospital association in which back then, which is 139 00:05:08,095 --> 00:05:10,079 not the case right now, that was largely 140 00:05:10,079 --> 00:05:12,660 led by medics and was trying to bring 141 00:05:12,959 --> 00:05:14,639 people together. So that for me was it 142 00:05:14,639 --> 00:05:17,459 was such a relief to know one initially 143 00:05:17,519 --> 00:05:19,860 and then two other people who are parents 144 00:05:20,160 --> 00:05:21,860 of children with, hemophilia. 145 00:05:22,160 --> 00:05:25,004 We were raising similar kinds of issues. Me 146 00:05:25,004 --> 00:05:27,264 and this gentleman, Obu, then became, 147 00:05:27,805 --> 00:05:29,324 my partner in crime as I would call 148 00:05:29,324 --> 00:05:32,125 in the society, Kehyo Chege. And we kept 149 00:05:32,125 --> 00:05:34,705 raising that we need to have a parent's, 150 00:05:35,165 --> 00:05:37,725 you know, view or a patient view to, 151 00:05:38,300 --> 00:05:41,120 to, to this organization and how can we, 152 00:05:41,740 --> 00:05:44,459 really bring those issues back. But then at 153 00:05:44,459 --> 00:05:46,240 around that time, I lost my son 154 00:05:46,540 --> 00:05:48,540 and there was no turning point in terms 155 00:05:48,540 --> 00:05:50,060 of this has to change. So I had 156 00:05:50,060 --> 00:05:52,300 that drive that, we, we needed to be 157 00:05:52,300 --> 00:05:53,040 hired as 158 00:05:53,354 --> 00:05:55,115 parents. We could not have lost him if 159 00:05:55,115 --> 00:05:57,274 one or two, three and four things were 160 00:05:57,274 --> 00:05:59,595 in place. We needed a community like this. 161 00:05:59,595 --> 00:06:01,675 So in losing him, then the people that 162 00:06:01,675 --> 00:06:03,914 I had already met, you know, came around 163 00:06:03,914 --> 00:06:06,555 me. We went through his funeral and all 164 00:06:06,555 --> 00:06:09,689 that. And after that settled out is when 165 00:06:09,689 --> 00:06:11,769 I received a card, because one of the 166 00:06:11,769 --> 00:06:13,610 ladies that I had met at the Kenya 167 00:06:13,610 --> 00:06:15,709 International Hospital, I had already, 168 00:06:16,169 --> 00:06:18,810 met with Laurie who had attempted to come 169 00:06:18,810 --> 00:06:20,349 into Kenya way before, 170 00:06:21,615 --> 00:06:23,375 you know, this time and tried to make 171 00:06:23,375 --> 00:06:25,535 inroads but was not able to. And so 172 00:06:25,535 --> 00:06:27,055 she had told her about me that I 173 00:06:27,055 --> 00:06:29,634 was trying to, you know, to get hemophilia 174 00:06:30,495 --> 00:06:32,814 organization started in Kenya. And so she sent 175 00:06:32,814 --> 00:06:34,735 me a card to say I mean, of 176 00:06:34,735 --> 00:06:37,569 course, to share her condolences about losing, my 177 00:06:37,569 --> 00:06:39,810 son. And I kept that card with me 178 00:06:39,810 --> 00:06:41,810 for a very long time, because then we 179 00:06:41,810 --> 00:06:43,490 kept in touch and said, you know what? 180 00:06:43,490 --> 00:06:45,329 There is someone like me who's making this 181 00:06:45,329 --> 00:06:47,250 change around the world. When you have that 182 00:06:47,250 --> 00:06:49,509 unity of purpose, then we began conversations 183 00:06:49,810 --> 00:06:50,310 with 184 00:06:50,705 --> 00:06:53,824 Lori. She shared her book on being a 185 00:06:53,824 --> 00:06:55,045 haemophilia leader 186 00:06:55,585 --> 00:06:57,845 and, and there it began. So we got 187 00:06:58,305 --> 00:06:59,764 four of us parents together. 188 00:07:00,464 --> 00:07:01,605 We went into 189 00:07:01,985 --> 00:07:02,805 this cafeteria 190 00:07:03,264 --> 00:07:06,159 of the hospital where we just died and 191 00:07:06,159 --> 00:07:08,079 we began. Yeah. Thank you so much for 192 00:07:08,079 --> 00:07:09,519 sharing all that. And, you know, I think 193 00:07:09,519 --> 00:07:12,740 what's familiar to me is Laureen found someone 194 00:07:12,959 --> 00:07:15,459 like you who wanted to make an impact. 195 00:07:15,519 --> 00:07:16,959 Tell us what it's like living with a 196 00:07:16,959 --> 00:07:18,419 bleeding disorder in Kenya, 197 00:07:18,964 --> 00:07:21,845 and how do your organizations come together to 198 00:07:21,845 --> 00:07:24,324 help those families? Yeah. So as you say, 199 00:07:24,324 --> 00:07:25,305 meeting Laurie, 200 00:07:25,845 --> 00:07:28,164 and then we invited her to Kenya and 201 00:07:28,164 --> 00:07:30,564 she came and we would do outreach, go 202 00:07:30,564 --> 00:07:33,149 out and meet hemophilia families and see what 203 00:07:33,149 --> 00:07:35,649 it is, you know, day to day. 204 00:07:36,110 --> 00:07:38,589 Step into government offices at the Ministry of 205 00:07:38,589 --> 00:07:41,069 Health and try to bring home hemophilia up 206 00:07:41,069 --> 00:07:43,649 into, the agenda of the government's priorities 207 00:07:44,110 --> 00:07:46,774 and, just doing a lot of that advocacy 208 00:07:46,834 --> 00:07:49,634 and awareness going out into the media, both 209 00:07:49,634 --> 00:07:50,535 print and electronic, 210 00:07:50,915 --> 00:07:53,074 on TV, and just talking about hemophilia and 211 00:07:53,074 --> 00:07:53,814 getting people 212 00:07:54,274 --> 00:07:56,355 to know about it and to sign up. 213 00:07:56,355 --> 00:07:58,240 This was such a huge step of faith 214 00:07:58,240 --> 00:08:00,079 because we did not even know what kind 215 00:08:00,079 --> 00:08:01,599 of support are we going to offer these 216 00:08:01,599 --> 00:08:03,439 people, but we're like, can we get together 217 00:08:03,439 --> 00:08:03,839 fast, 218 00:08:04,479 --> 00:08:06,879 you know, to get the numbers up so 219 00:08:06,879 --> 00:08:09,039 that we can make a case? But then 220 00:08:09,039 --> 00:08:10,099 Lori had also 221 00:08:10,555 --> 00:08:13,754 founded Project Share. They were sending, medicine to 222 00:08:13,914 --> 00:08:15,535 still send medicine to developing, 223 00:08:16,074 --> 00:08:18,235 you know, countries. And that was one of 224 00:08:18,235 --> 00:08:20,254 the initial programs we began 225 00:08:20,714 --> 00:08:23,269 at, at, Save One Life in terms of 226 00:08:23,269 --> 00:08:25,110 getting the medicine before we went on to 227 00:08:25,110 --> 00:08:26,870 the other programs, which I think we're going 228 00:08:26,870 --> 00:08:28,389 to talk about as we as we move 229 00:08:28,389 --> 00:08:30,629 along. Yeah. Absolutely. How are you making a 230 00:08:30,629 --> 00:08:33,029 difference in in people's lives in Kenya? And 231 00:08:33,029 --> 00:08:34,950 part of that was this project, Share, that 232 00:08:34,950 --> 00:08:38,115 distributes factor safely to these families. What other 233 00:08:38,115 --> 00:08:40,274 what other kinds of programmings, maybe in education 234 00:08:40,274 --> 00:08:41,495 or or mental health 235 00:08:42,274 --> 00:08:44,294 Mhmm. Do you do you provide for families 236 00:08:44,835 --> 00:08:47,154 to help support? Yeah. So after we did 237 00:08:47,154 --> 00:08:48,754 the medical in terms of, 238 00:08:49,394 --> 00:08:50,855 getting factor from 239 00:08:51,259 --> 00:08:53,340 project share. I like to say we are, 240 00:08:53,340 --> 00:08:55,340 even where we work, we are human beings 241 00:08:55,340 --> 00:08:57,740 first, you know, before we are workers. So 242 00:08:57,740 --> 00:09:00,320 it became quickly apparent that we needed 243 00:09:00,779 --> 00:09:02,779 the support groups. For me, that was very 244 00:09:02,779 --> 00:09:05,495 important for mothers to get together, for fathers 245 00:09:05,495 --> 00:09:07,355 to get together, for boys with hemophilia 246 00:09:07,975 --> 00:09:09,975 and siblings to get together and just have 247 00:09:09,975 --> 00:09:12,295 conversations on what helped, what worked and how 248 00:09:12,295 --> 00:09:14,375 do we support each other. But then it 249 00:09:14,375 --> 00:09:16,889 also became apparent that these children 250 00:09:17,190 --> 00:09:19,589 were not performing as well in school as 251 00:09:19,589 --> 00:09:23,529 others because of absence, distances to school, bleeds, 252 00:09:24,070 --> 00:09:26,470 going to school, you know, without shoes sometimes 253 00:09:26,470 --> 00:09:28,169 or without transport and you 254 00:09:28,629 --> 00:09:30,389 fall down and, you know, and, and long 255 00:09:30,389 --> 00:09:32,485 absence, they are not doing as well. And 256 00:09:32,485 --> 00:09:35,144 so we began, for those that had completed 257 00:09:35,684 --> 00:09:37,925 high school or dropped out of high school 258 00:09:37,925 --> 00:09:40,565 or, or just got into college, micro grants 259 00:09:40,565 --> 00:09:42,024 to make sure that they were economically, 260 00:09:44,004 --> 00:09:46,659 you know, empowered, that they could, earn a 261 00:09:46,659 --> 00:09:48,980 livelihood and earn a living out of the 262 00:09:48,980 --> 00:09:51,240 enterprise as they did. We had, I think, 263 00:09:51,299 --> 00:09:52,980 I remember Simon who had, 264 00:09:53,460 --> 00:09:55,460 a cow and still keeps his cows up 265 00:09:55,460 --> 00:09:58,120 to now. And he was married with, children. 266 00:09:58,445 --> 00:10:00,284 We had someone else who began like a 267 00:10:00,284 --> 00:10:00,784 shoe, 268 00:10:01,565 --> 00:10:03,424 you know, business. Another one began 269 00:10:04,125 --> 00:10:06,924 a clothing, you know, sales line. Really those 270 00:10:06,924 --> 00:10:09,084 kinds of things, which are not as others 271 00:10:09,084 --> 00:10:09,904 as farm 272 00:10:10,205 --> 00:10:13,164 labor, which is where agriculture is the biggest 273 00:10:13,164 --> 00:10:15,769 employer of rural, you know, families in Kenya 274 00:10:15,769 --> 00:10:17,769 and in the developing world. And so ensuring 275 00:10:17,769 --> 00:10:20,170 that they got those grants, for them to, 276 00:10:20,250 --> 00:10:23,550 have some almost gainful employment. And then again, 277 00:10:23,769 --> 00:10:26,090 very close to me and very dear to 278 00:10:26,090 --> 00:10:29,044 what I do is considering the women's empowerment 279 00:10:29,105 --> 00:10:32,384 element of it because women remain the primary 280 00:10:32,384 --> 00:10:35,105 caretakers. I was in formal employment. My son's 281 00:10:35,105 --> 00:10:37,745 father is in formal employment, but if we 282 00:10:37,745 --> 00:10:40,144 had to get admitted in hospital, it was 283 00:10:40,144 --> 00:10:41,284 me as the mother, 284 00:10:41,669 --> 00:10:43,750 taking absence of work and staying in the 285 00:10:43,750 --> 00:10:46,950 hospital. So that burden on care, caregiving for 286 00:10:46,950 --> 00:10:48,409 hemophilia, it's very disproportionate 287 00:10:49,110 --> 00:10:49,610 towards, 288 00:10:49,990 --> 00:10:51,669 you know, the mothers. And so we also 289 00:10:51,669 --> 00:10:54,264 wanted to, get them, the micro grants, so 290 00:10:54,264 --> 00:10:56,105 that they could also earn a living and 291 00:10:56,105 --> 00:10:57,784 something that was easier for them to do 292 00:10:57,784 --> 00:10:59,865 at home. So, you know, she can keep 293 00:10:59,865 --> 00:11:01,625 in so that she's close enough to take 294 00:11:01,625 --> 00:11:03,164 care of her child and earning, 295 00:11:03,544 --> 00:11:05,464 you know, money as well. And then we 296 00:11:05,464 --> 00:11:07,164 have very sharp children, hemophilia 297 00:11:07,544 --> 00:11:08,845 children. They're very active. 298 00:11:09,269 --> 00:11:11,750 They keep getting injuries, but they're also very 299 00:11:11,750 --> 00:11:13,910 sharp. And so we got into the education 300 00:11:13,910 --> 00:11:16,950 program in getting scholarships for those that come 301 00:11:16,950 --> 00:11:19,690 from the families that can really not afford, 302 00:11:19,990 --> 00:11:21,370 you know, to pay for their 303 00:11:21,695 --> 00:11:24,414 education. Aside of the mothers, we also have 304 00:11:24,414 --> 00:11:25,315 grants for 305 00:11:25,695 --> 00:11:28,195 a few fathers that are really the breadwinners 306 00:11:28,254 --> 00:11:30,174 of the family in supporting. So we have 307 00:11:30,174 --> 00:11:31,375 one at the coast who's, 308 00:11:31,934 --> 00:11:34,174 in into a tailoring business, ensuring that he 309 00:11:34,174 --> 00:11:37,154 gets the machines and, the supplies to provide 310 00:11:37,750 --> 00:11:39,610 for his family. And then finally, 311 00:11:39,990 --> 00:11:42,649 the cash transfers, they say cash is king. 312 00:11:42,949 --> 00:11:43,610 And it 313 00:11:44,230 --> 00:11:46,949 gives dignity to families when you give them 314 00:11:46,949 --> 00:11:49,029 a stipend and an allowance, you know, a 315 00:11:49,029 --> 00:11:50,764 monthly one so that they can 316 00:11:51,225 --> 00:11:53,784 prioritize some of those needs. You've shared so 317 00:11:53,784 --> 00:11:57,144 much in terms of the impact that a 318 00:11:57,144 --> 00:11:58,684 sponsorship can have. 319 00:11:59,464 --> 00:12:02,044 It's beyond the medicine that's needed. 320 00:12:03,065 --> 00:12:06,110 It's the travel to the care. It's 321 00:12:06,730 --> 00:12:08,730 I mean, the idea that you're able to 322 00:12:08,730 --> 00:12:10,670 help someone start a small business 323 00:12:11,129 --> 00:12:13,210 so that they can support their family. I 324 00:12:13,210 --> 00:12:16,350 think what maybe gets lost on, like, sponsors 325 00:12:16,490 --> 00:12:18,410 and what it means to sponsor, especially, I 326 00:12:18,410 --> 00:12:20,750 think, in a country like America, is 327 00:12:21,184 --> 00:12:21,924 how far, 328 00:12:22,784 --> 00:12:24,144 you know, a $20 329 00:12:24,225 --> 00:12:26,245 American dollar sponsorship can go, 330 00:12:26,705 --> 00:12:28,164 in another country. And, 331 00:12:28,945 --> 00:12:30,865 it's just so impressive to hear that it's 332 00:12:30,865 --> 00:12:33,524 not just the medicine. It's also the education, 333 00:12:33,745 --> 00:12:36,429 and it's the it's the travel. It's it's 334 00:12:36,429 --> 00:12:38,910 the putting put putting families in positions to 335 00:12:38,910 --> 00:12:40,370 be able to support themselves. 336 00:12:41,070 --> 00:12:43,570 Yes. And it's it's just really it's incredible 337 00:12:43,629 --> 00:12:45,230 work. And so when you when you think 338 00:12:45,230 --> 00:12:46,845 about the work you've done, 339 00:12:47,324 --> 00:12:49,164 in Kenya, maybe going back all the way 340 00:12:49,164 --> 00:12:51,084 to the beginning and how you're connected to 341 00:12:51,084 --> 00:12:52,845 Save One Life now, what's what do you 342 00:12:52,845 --> 00:12:55,884 feel is the biggest maybe difference in the 343 00:12:55,884 --> 00:12:58,204 impact you've made and what gives you hope 344 00:12:58,204 --> 00:13:00,845 moving forward? Yeah. So it's all of that. 345 00:13:00,845 --> 00:13:03,850 It's it's just children living a normal life. 346 00:13:04,009 --> 00:13:05,610 Like I lost my son, as I said, 347 00:13:05,610 --> 00:13:08,169 just shy of his sixth birthday. It was 348 00:13:08,169 --> 00:13:10,410 very difficult then, but one of the things 349 00:13:10,410 --> 00:13:12,730 that really stuck with me that he had 350 00:13:12,730 --> 00:13:14,970 a normal, a near normal life. You know, 351 00:13:14,970 --> 00:13:16,904 despite that As a parent, that's what you 352 00:13:16,904 --> 00:13:18,684 want for your child. It's very difficult 353 00:13:18,985 --> 00:13:21,225 because you you wish you would take that 354 00:13:21,225 --> 00:13:22,904 pain off your child and, and, and hold 355 00:13:22,904 --> 00:13:25,304 it for themselves. And so ensuring that children 356 00:13:25,304 --> 00:13:27,625 are not breathing in pain because they have 357 00:13:27,625 --> 00:13:29,304 knee bleeds and all of that, they're able 358 00:13:29,304 --> 00:13:31,529 to go to school and play with other 359 00:13:31,529 --> 00:13:33,790 children and then go on with their education. 360 00:13:34,330 --> 00:13:37,549 And that you remove a lot of that 361 00:13:37,610 --> 00:13:39,629 worry and stress from their parents. 362 00:13:40,570 --> 00:13:42,809 I remember one lady, sharing with me is 363 00:13:42,809 --> 00:13:44,404 like, oh, oh, I can finally dress up 364 00:13:44,404 --> 00:13:46,245 and turn up for the meeting. I had 365 00:13:46,245 --> 00:13:47,845 to go to the hospital at night and 366 00:13:47,845 --> 00:13:49,605 my neighbors were always wondering what I'm up 367 00:13:49,605 --> 00:13:51,544 to, you know, leaving my place at night. 368 00:13:51,845 --> 00:13:53,524 But now I can stay over here and 369 00:13:53,524 --> 00:13:55,784 you can just tell that, just that 370 00:13:56,149 --> 00:13:59,290 the mental health, you know, elements of that. 371 00:13:59,350 --> 00:14:02,149 And then people just being, you know, being, 372 00:14:02,870 --> 00:14:05,370 you don't empower people, they quite empower themselves 373 00:14:05,429 --> 00:14:07,429 through the decisions they make, and they have 374 00:14:07,429 --> 00:14:09,690 the agency to make those decisions because 375 00:14:10,245 --> 00:14:12,004 they have the access to the, to the 376 00:14:12,004 --> 00:14:14,085 financials, you know, to start up that business 377 00:14:14,085 --> 00:14:15,845 and all of that. We started with boys 378 00:14:15,845 --> 00:14:17,365 who are very young, who are my son's 379 00:14:17,365 --> 00:14:19,225 age right now, because my son is 18 380 00:14:19,445 --> 00:14:22,904 and now they are young people with families 381 00:14:23,409 --> 00:14:26,210 and wives and children, and then turning up, 382 00:14:26,210 --> 00:14:28,850 just seeing that, that that all human being. 383 00:14:28,850 --> 00:14:30,610 I remember for some of them, you went 384 00:14:30,610 --> 00:14:32,389 and first saw them, they were on crutches. 385 00:14:32,769 --> 00:14:34,850 Their parents do not even understand what the 386 00:14:34,850 --> 00:14:36,735 condition was. They just know that I lost 387 00:14:36,735 --> 00:14:38,334 a child to this kind of a thing. 388 00:14:38,334 --> 00:14:40,815 He had severe headaches and died. So then 389 00:14:40,815 --> 00:14:42,654 you realize, oh, that was a head blight 390 00:14:42,654 --> 00:14:44,654 that they actually had. And now they have 391 00:14:44,654 --> 00:14:46,735 another son with swollen knees, you know, with 392 00:14:46,735 --> 00:14:48,815 crushes and now they're intra factor. They have 393 00:14:48,815 --> 00:14:49,554 got physiotherapy. 394 00:14:50,174 --> 00:14:52,550 They know what is happening, they know where 395 00:14:52,550 --> 00:14:54,470 they can go to help, and now they're 396 00:14:54,470 --> 00:14:56,790 walking around and then they have got married. 397 00:14:56,790 --> 00:14:59,290 Some of my favorite is receiving wedding invitations. 398 00:14:59,990 --> 00:15:01,830 Wow. That's gotta be so fun for you. 399 00:15:01,830 --> 00:15:04,470 Oh my goodness. Yes. You know? Yeah. Yeah. 400 00:15:04,470 --> 00:15:04,965 Yeah. 401 00:15:05,285 --> 00:15:07,445 Well, thank you so much for taking time. 402 00:15:07,445 --> 00:15:09,225 I know you've been traveling so much. 403 00:15:09,764 --> 00:15:11,764 And I think you're in four, maybe five 404 00:15:11,764 --> 00:15:13,445 different time zones over the course of a 405 00:15:13,445 --> 00:15:15,365 couple weeks when we were chatting. Yes. So 406 00:15:15,445 --> 00:15:17,285 but we we made it here and and 407 00:15:17,285 --> 00:15:18,985 now you're in you're in Mexico. 408 00:15:19,509 --> 00:15:21,509 So tell us a little bit about the 409 00:15:21,509 --> 00:15:23,909 work you're doing out of Mexico. I'm a 410 00:15:23,909 --> 00:15:24,730 gender specialist. 411 00:15:25,350 --> 00:15:27,289 I work right now for the CIMIT, 412 00:15:27,750 --> 00:15:30,709 which is c I double m y t, 413 00:15:30,709 --> 00:15:33,384 but that's the Spanish, acronym for the International 414 00:15:33,764 --> 00:15:36,164 Center for Maize and Wheat Improvement. Although we 415 00:15:36,164 --> 00:15:38,004 do work on other crops that are not 416 00:15:38,004 --> 00:15:41,065 necessarily maize and wheat because of, all integrated 417 00:15:41,445 --> 00:15:43,445 systems and the challenges that we face now 418 00:15:43,445 --> 00:15:45,720 as climate change. So within CIMIT, I'm the 419 00:15:45,720 --> 00:15:48,779 Director for Gender Equity, Youth and Social Inclusion, 420 00:15:49,160 --> 00:15:52,940 where we are ensuring that we reach everybody 421 00:15:53,399 --> 00:15:56,540 appropriately, whether they are men, women, young people, 422 00:15:56,600 --> 00:15:58,540 marginalized communities, or Indigenous 423 00:15:59,264 --> 00:16:01,365 peoples with the right tools and approaches. 424 00:16:01,904 --> 00:16:03,504 And just like I have been saying, that 425 00:16:03,504 --> 00:16:05,665 they actually benefit from this. They tell you 426 00:16:05,665 --> 00:16:08,705 that we have increased incomes, improved livelihoods, better 427 00:16:08,705 --> 00:16:10,785 nutrition. We can take our children, you know, 428 00:16:10,785 --> 00:16:13,360 to school. But very, very important that they 429 00:16:13,360 --> 00:16:15,679 have that agency and decision making, and they 430 00:16:15,679 --> 00:16:18,800 can influence processes by service providers, the government, 431 00:16:18,800 --> 00:16:20,559 and all of that, and even within the 432 00:16:20,559 --> 00:16:23,059 households. You will not believe it, Kai, that 433 00:16:23,120 --> 00:16:25,440 sometimes a woman is even considered as a 434 00:16:25,440 --> 00:16:27,985 laborer in her husband's farm. She cannot make 435 00:16:27,985 --> 00:16:29,764 decisions on what seeds or 436 00:16:30,065 --> 00:16:32,544 what variety or what crop, you know, to 437 00:16:32,544 --> 00:16:34,464 grow. So just ensuring that we look at 438 00:16:34,464 --> 00:16:37,044 those gender dynamics, you know, within the household, 439 00:16:37,745 --> 00:16:40,029 but most importantly that we transform systems. And 440 00:16:40,029 --> 00:16:42,110 that is also very, very, very important in 441 00:16:42,110 --> 00:16:43,570 the work that we do for hemophilia 442 00:16:44,029 --> 00:16:46,370 in terms of ensuring that the governments include 443 00:16:46,429 --> 00:16:47,970 hemophilia as one of the, 444 00:16:48,350 --> 00:16:49,330 you know, the conditions 445 00:16:50,429 --> 00:16:51,330 in the essential 446 00:16:51,710 --> 00:16:54,429 list of diseases, the essential list of medicines. 447 00:16:54,429 --> 00:16:55,934 So those systems are transformed 448 00:16:56,475 --> 00:16:58,495 to, you know, to support. So that's what 449 00:16:58,714 --> 00:17:00,394 I do for a living. I think what 450 00:17:00,394 --> 00:17:02,475 I do at the society has influenced who 451 00:17:02,475 --> 00:17:04,075 I become at my work and what I 452 00:17:04,075 --> 00:17:06,075 do at my work has also influenced what 453 00:17:06,075 --> 00:17:08,369 we do at the society. Yeah. It sounds 454 00:17:08,369 --> 00:17:10,369 like you're very busy. As a leader, how 455 00:17:10,369 --> 00:17:11,890 do you balance all that? How do you, 456 00:17:11,890 --> 00:17:13,250 what makes you get up in the morning? 457 00:17:13,250 --> 00:17:16,549 First, I think it is that the purpose, 458 00:17:16,849 --> 00:17:19,490 being very purpose driven and it's something that 459 00:17:19,490 --> 00:17:22,265 you're passionate about. It is something that life 460 00:17:22,265 --> 00:17:24,505 has handed to you and that you can 461 00:17:24,505 --> 00:17:27,644 do nothing about. If you truly believe in 462 00:17:28,184 --> 00:17:28,684 being 463 00:17:29,144 --> 00:17:31,144 the change that we want to see, yeah, 464 00:17:31,384 --> 00:17:32,285 you know, around 465 00:17:32,664 --> 00:17:33,325 the world 466 00:17:33,720 --> 00:17:36,359 and being a key player in effecting that 467 00:17:36,359 --> 00:17:38,759 change and carrying others with you as a 468 00:17:38,759 --> 00:17:41,480 leader, just living that value based life and 469 00:17:41,480 --> 00:17:44,599 say, I'm really for excellence and integrity in 470 00:17:44,599 --> 00:17:45,799 what we do. And this is how I 471 00:17:45,799 --> 00:17:47,480 want people, you know, to turn up at 472 00:17:47,480 --> 00:17:50,265 work, but what might prevent people from turning 473 00:17:50,265 --> 00:17:53,224 up, in that way? How do we continue 474 00:17:53,224 --> 00:17:54,605 to build the next, 475 00:17:55,224 --> 00:17:57,944 crop of leaders, both in the hemophilia space 476 00:17:57,944 --> 00:18:00,025 in Nunezbehaviya? How do you mentor people? How 477 00:18:00,025 --> 00:18:02,605 do you handhold them? Lori mentored me into 478 00:18:02,950 --> 00:18:05,109 a hemophilia, wild and care and handheld me 479 00:18:05,109 --> 00:18:07,830 and provided support, came to Kenya every year 480 00:18:07,830 --> 00:18:09,350 and then, and then, and did all of 481 00:18:09,350 --> 00:18:11,769 that. How do I pay it forward? 482 00:18:12,070 --> 00:18:14,390 Yeah. Yeah. Into the next community and that, 483 00:18:14,390 --> 00:18:15,910 do I hold other, how do we just 484 00:18:15,910 --> 00:18:17,529 continue that, you know, virtuous 485 00:18:18,134 --> 00:18:20,455 cycle and ensuring that there's, for me, it's 486 00:18:20,455 --> 00:18:23,115 a whole issue of justice, like social justice. 487 00:18:23,414 --> 00:18:24,234 Yeah, absolutely. 488 00:18:24,695 --> 00:18:27,115 Well, thank you so much for your time 489 00:18:27,335 --> 00:18:29,095 for being here today and just thank you 490 00:18:29,095 --> 00:18:30,795 so much for your time. You're most welcome. 491 00:18:31,159 --> 00:18:32,599 To learn more about Save One Life and 492 00:18:32,599 --> 00:18:36,940 how sponsorship transforms lives, visit save1life.net/sponsorship. 493 00:18:37,240 --> 00:18:38,440 And if you'd like to help share the 494 00:18:38,440 --> 00:18:40,359 mission, please follow the show, leave a review, 495 00:18:40,359 --> 00:18:42,039 and send the episode to someone who believes 496 00:18:42,039 --> 00:18:44,835 that dignity and opportunity should never depend on 497 00:18:44,914 --> 00:18:46,674 geography. Thank you for listening to where hope 498 00:18:46,674 --> 00:18:49,075 begins, the save one life podcast, one country, 499 00:18:49,075 --> 00:18:51,095 one community, and one life at a time. 500 00:18:57,470 --> 00:18:59,570 Thank you for listening to Where Hope Begins, 501 00:18:59,630 --> 00:19:01,789 the Save One Life podcast. Because when one 502 00:19:01,789 --> 00:19:02,769 life is supported, 503 00:19:03,070 --> 00:19:05,710 generations can be transformed. Presented by Save One 504 00:19:05,710 --> 00:19:08,670 Life in partnership with Balancing Life's Issues, produced 505 00:19:08,670 --> 00:19:10,670 by me, Kai. Got an idea for the 506 00:19:10,670 --> 00:19:15,075 show? Send me an email at kai@balancinglife'sissues.com. 507 00:19:15,075 --> 00:19:17,474 Did today's story move you? Sponsor a child 508 00:19:17,474 --> 00:19:19,154 at save1life.net 509 00:19:19,154 --> 00:19:22,134 backslash sponsorship. Anything else to add, Miles?