1 00:00:00,880 --> 00:00:02,799 You feel alone when you go into these 2 00:00:02,799 --> 00:00:04,639 things, but when you leave, you come out 3 00:00:04,639 --> 00:00:05,459 as family. 4 00:00:06,160 --> 00:00:08,160 And we were nervous going to the very 5 00:00:08,160 --> 00:00:09,839 first one. But like I said, by the 6 00:00:09,839 --> 00:00:12,019 time we left, we had so much information 7 00:00:12,160 --> 00:00:14,099 and met so many friends 8 00:00:14,559 --> 00:00:16,475 Mhmm. And made connections 9 00:00:17,175 --> 00:00:19,574 that now a few years later, we have 10 00:00:19,574 --> 00:00:21,894 people that we consider family all over the 11 00:00:21,894 --> 00:00:22,394 country. 12 00:00:25,095 --> 00:00:27,690 Welcome to Boundless Bee, the Hemophilia Bee Podcast, 13 00:00:27,929 --> 00:00:29,850 the podcast standing with you from a family 14 00:00:29,850 --> 00:00:32,429 like yours, presented by the Coalition for Hemophilia 15 00:00:32,649 --> 00:00:35,229 Bee and in partnership with Balancing Life's Issues. 16 00:00:35,690 --> 00:00:38,570 Today's guest is Mandy Abereg, a mom, a 17 00:00:38,570 --> 00:00:40,489 fierce advocate, and a powerful voice in the 18 00:00:40,489 --> 00:00:43,424 hemophilia bee community. Her journey has been anything 19 00:00:43,424 --> 00:00:45,505 but easy, but it's one that shines with 20 00:00:45,505 --> 00:00:46,565 strength and courage. 21 00:00:46,945 --> 00:00:49,185 This episode is about resilience. It's about learning 22 00:00:49,185 --> 00:00:50,625 how to fight for your family even when 23 00:00:50,625 --> 00:00:52,065 you don't have all the answers and about 24 00:00:52,065 --> 00:00:53,744 what happens when you find the courage to 25 00:00:53,744 --> 00:00:56,270 show up, speak out, and build a community 26 00:00:56,270 --> 00:00:58,210 around you. Welcome to the podcast, Mandy. 27 00:00:59,710 --> 00:01:00,210 Hello. 28 00:01:00,750 --> 00:01:02,750 Glad to be here. Well, it's nice to 29 00:01:02,750 --> 00:01:04,290 nice to hear from you from 30 00:01:04,750 --> 00:01:07,650 Southern Ohio, you said? Yes. South or Shadyside, 31 00:01:07,709 --> 00:01:10,665 Ohio is where I'm from. Fantastic. So, I 32 00:01:10,665 --> 00:01:12,905 guess just start by telling our listeners about 33 00:01:12,984 --> 00:01:14,344 a little bit about your family history when 34 00:01:14,344 --> 00:01:16,265 it comes to hemophilia b. We did not 35 00:01:16,265 --> 00:01:19,145 know that hemophilia was in our family at 36 00:01:19,145 --> 00:01:19,645 all. 37 00:01:20,185 --> 00:01:22,525 And what we know, there is no 38 00:01:23,630 --> 00:01:26,750 signs of hemophilia in our family. When Cooper 39 00:01:26,750 --> 00:01:28,290 was born, it was a surprise. 40 00:01:29,390 --> 00:01:31,870 And then I had genetic testing done that 41 00:01:31,870 --> 00:01:33,890 I must be a spontaneous mutation. 42 00:01:34,270 --> 00:01:36,349 And so tell us about finding out how 43 00:01:36,349 --> 00:01:37,635 your son had it. 44 00:01:38,755 --> 00:01:41,395 When Cooper was born, they did the vitamin 45 00:01:41,395 --> 00:01:43,635 k shot, and he busted open about three 46 00:01:43,635 --> 00:01:46,435 times, couple times on nurses that it bled 47 00:01:46,435 --> 00:01:48,674 out on their clothing. And one time, he 48 00:01:48,674 --> 00:01:50,594 bled out all down the front of my 49 00:01:50,594 --> 00:01:52,719 mother in law's shirt, and we thought it 50 00:01:52,719 --> 00:01:55,599 was odd, but nobody said anything. And he 51 00:01:55,599 --> 00:01:56,099 stopped. 52 00:01:56,640 --> 00:01:58,979 But the next day, when he was circumcised, 53 00:01:59,200 --> 00:02:01,599 they took a very long time when they 54 00:02:01,599 --> 00:02:02,500 took him away. 55 00:02:03,119 --> 00:02:04,719 When they brought him back, the nurse had 56 00:02:04,719 --> 00:02:06,159 a look of fear on her face, and 57 00:02:06,159 --> 00:02:07,575 she's like, I gotta take him back. 58 00:02:08,215 --> 00:02:10,074 Back. So then I got up and I 59 00:02:10,375 --> 00:02:12,134 went down and I said, what is going 60 00:02:12,134 --> 00:02:12,634 on? 61 00:02:13,014 --> 00:02:14,614 And they're like, we can't get his bleeding 62 00:02:14,614 --> 00:02:16,155 to stop. He won't stop bleeding. 63 00:02:16,534 --> 00:02:18,534 So they ended up using nitrate sticks on 64 00:02:18,534 --> 00:02:19,680 him to burn him, 65 00:02:20,239 --> 00:02:22,479 and it got hit down to oozing. And 66 00:02:22,479 --> 00:02:24,239 then that's when I said that we needed 67 00:02:24,239 --> 00:02:26,000 to have blood work done to see what 68 00:02:26,000 --> 00:02:27,060 was going on. 69 00:02:27,519 --> 00:02:30,259 And that's how they came across the hemophilia 70 00:02:30,479 --> 00:02:31,139 b diagnosis? 71 00:02:32,015 --> 00:02:34,275 Well, at that point, the evening, the pediatrician 72 00:02:34,495 --> 00:02:36,895 came in, and he looked at us and 73 00:02:36,895 --> 00:02:38,594 said, something is wrong with your son. 74 00:02:39,455 --> 00:02:41,155 And he kept saying, oncology 75 00:02:41,534 --> 00:02:42,515 slash hematology. 76 00:02:43,534 --> 00:02:45,870 And all I heard was oncology because my 77 00:02:45,870 --> 00:02:47,949 mother passed away when I was three from 78 00:02:47,949 --> 00:02:49,489 brain cancer. So, 79 00:02:50,189 --> 00:02:52,209 of course, that's what I only heard. 80 00:02:52,909 --> 00:02:53,409 And 81 00:02:53,949 --> 00:02:56,349 he just said that they wasn't they wasn't 82 00:02:56,349 --> 00:02:57,569 sure what it was. 83 00:02:58,655 --> 00:03:00,414 But then by four days old, 84 00:03:00,814 --> 00:03:01,555 we were 85 00:03:01,935 --> 00:03:04,174 up at Pittsburgh, and they told us that 86 00:03:04,174 --> 00:03:06,114 he was a moderate hemophiliac. 87 00:03:07,055 --> 00:03:09,134 But, really, later on, we found out he 88 00:03:09,134 --> 00:03:10,514 is a severe hemophiliac. 89 00:03:12,719 --> 00:03:14,739 So I guess as a mother and 90 00:03:15,120 --> 00:03:17,439 first time parent at this at the Yes. 91 00:03:17,439 --> 00:03:18,739 26 years old, 92 00:03:19,039 --> 00:03:21,439 first child. Our first child, we had a 93 00:03:21,439 --> 00:03:21,939 miscarriage. 94 00:03:22,639 --> 00:03:23,299 So then 95 00:03:23,645 --> 00:03:25,025 we got pregnant with Cooper. 96 00:03:25,805 --> 00:03:27,645 And, you know, to have this little baby 97 00:03:27,645 --> 00:03:29,645 and to find out first off, he's covered 98 00:03:29,645 --> 00:03:32,205 in bruises, and it wasn't nothing that anybody 99 00:03:32,205 --> 00:03:34,044 did, but just the normal, you know, smack 100 00:03:34,044 --> 00:03:35,485 in the back of a child when they're 101 00:03:35,485 --> 00:03:37,504 born. Mhmm. He's covered in bruises. 102 00:03:37,889 --> 00:03:40,289 They're telling us something's wrong. It it was 103 00:03:40,289 --> 00:03:41,810 like we always say he came in like 104 00:03:41,810 --> 00:03:42,469 a tornado. 105 00:03:44,530 --> 00:03:46,310 So I guess tell us about 106 00:03:46,770 --> 00:03:49,250 emotionally, you know, that experience at that time, 107 00:03:49,250 --> 00:03:51,090 and what was that journey like in those 108 00:03:51,090 --> 00:03:53,509 initial years of Cooper's life? It was like 109 00:03:53,865 --> 00:03:56,104 you were always on guard. Like, it was 110 00:03:56,104 --> 00:03:56,604 just 111 00:03:57,944 --> 00:04:00,185 it's hard to explain. Like, it was just 112 00:04:00,185 --> 00:04:02,664 like life was moving so fast, and, like, 113 00:04:02,664 --> 00:04:04,905 in a way, you were kinda standing still 114 00:04:04,905 --> 00:04:06,604 and everything just kept going. 115 00:04:07,229 --> 00:04:08,909 And, like, my husband and I, we were 116 00:04:08,909 --> 00:04:09,810 trying to figure 117 00:04:10,349 --> 00:04:12,930 everything out and take the information in. 118 00:04:13,789 --> 00:04:16,029 And my husband laughs about it now, but 119 00:04:16,029 --> 00:04:18,350 we came home and we bought a notebook 120 00:04:18,350 --> 00:04:20,670 and we literally wrote every question you can 121 00:04:20,670 --> 00:04:22,610 think of about a child with a bleeding 122 00:04:22,725 --> 00:04:23,225 disorder. 123 00:04:23,605 --> 00:04:25,365 And now looking back through the questions, they 124 00:04:25,365 --> 00:04:26,884 were funny. But at the time, it just 125 00:04:26,884 --> 00:04:29,865 shows you how two young scared parents were 126 00:04:30,084 --> 00:04:31,944 and wanted to know how that they could 127 00:04:32,245 --> 00:04:33,865 raise a child with hemophilia. 128 00:04:34,645 --> 00:04:35,145 Mhmm. 129 00:04:35,930 --> 00:04:37,930 And I yeah. I know this story is 130 00:04:37,930 --> 00:04:38,750 so familiar, 131 00:04:39,129 --> 00:04:40,490 to so many people, but we know there 132 00:04:40,490 --> 00:04:42,889 are listeners out there who are probably might 133 00:04:42,889 --> 00:04:44,729 be experiencing this for the first time. So 134 00:04:44,729 --> 00:04:47,209 tell us about, you know, wanting your family 135 00:04:47,209 --> 00:04:49,289 to continue to grow. Like, was was there 136 00:04:49,289 --> 00:04:50,509 reservations about 137 00:04:50,985 --> 00:04:53,544 continuing to have more children? No. We always 138 00:04:53,544 --> 00:04:55,404 knew we wanted at least one more. 139 00:04:56,345 --> 00:04:58,824 And not that it wasn't there. We talked 140 00:04:58,824 --> 00:05:00,904 about it. We knew it was a fifty 141 00:05:00,904 --> 00:05:03,384 fifty shot, but we really did want another 142 00:05:03,384 --> 00:05:05,644 child. And we thought that we had, 143 00:05:07,079 --> 00:05:09,319 I don't wanna say the hemophilia under control, 144 00:05:09,319 --> 00:05:10,839 but we thought we could handle if we 145 00:05:10,839 --> 00:05:13,319 had another child with hemophilia. We met other 146 00:05:13,319 --> 00:05:15,319 families that had more than one child with 147 00:05:15,319 --> 00:05:15,819 hemophilia. 148 00:05:16,519 --> 00:05:18,199 So then that's when we decided to go 149 00:05:18,199 --> 00:05:20,394 ahead and have another child. I mean, so 150 00:05:20,394 --> 00:05:23,274 what was that journey like? Especially, I think, 151 00:05:23,274 --> 00:05:25,595 as your daughter came into the world, were 152 00:05:25,595 --> 00:05:27,915 there any complications with hemophilia? So when we 153 00:05:27,915 --> 00:05:29,754 found out we were having a girl, part 154 00:05:29,754 --> 00:05:31,194 of me was a little, like 155 00:05:32,089 --> 00:05:34,009 I wanna say take took a breath because 156 00:05:34,009 --> 00:05:34,830 I thought, well, 157 00:05:35,210 --> 00:05:37,850 then she won't more than likely won't have 158 00:05:37,850 --> 00:05:38,350 hemophilia. 159 00:05:38,810 --> 00:05:39,310 And 160 00:05:40,250 --> 00:05:42,009 because we were always told it, and that's 161 00:05:42,009 --> 00:05:44,009 what's hard in the the community now is 162 00:05:44,009 --> 00:05:46,490 a lot of doctors say that women are 163 00:05:46,490 --> 00:05:47,310 not bleeders. 164 00:05:47,714 --> 00:05:48,214 Mhmm. 165 00:05:48,754 --> 00:05:49,254 And 166 00:05:49,634 --> 00:05:51,395 they kept telling me that her factor level 167 00:05:51,395 --> 00:05:53,074 would be high. We would all have nothing 168 00:05:53,074 --> 00:05:53,975 to worry about 169 00:05:54,355 --> 00:05:55,895 because my level was higher. 170 00:05:56,435 --> 00:05:58,774 And she was born, and we waited, 171 00:05:59,314 --> 00:06:01,169 a couple months, and then we had her 172 00:06:01,169 --> 00:06:03,970 tested. And, unfortunately, she was, like, twenty seven 173 00:06:03,970 --> 00:06:04,470 percent. 174 00:06:05,329 --> 00:06:07,110 So she is a mild hemophilia 175 00:06:07,490 --> 00:06:07,990 ec, 176 00:06:08,529 --> 00:06:10,550 mild hemophilia b, and 177 00:06:11,729 --> 00:06:13,970 it's a little bit different. It's it's a 178 00:06:13,970 --> 00:06:16,069 different journey and maybe even a harder 179 00:06:16,444 --> 00:06:18,764 fight with her because I have to we've 180 00:06:18,764 --> 00:06:21,185 had to fight to get Factor and 181 00:06:22,365 --> 00:06:23,524 doctors to listen 182 00:06:23,964 --> 00:06:25,884 Yeah. About her. And that that's a big 183 00:06:25,884 --> 00:06:27,805 part of this message is, right, is is 184 00:06:27,805 --> 00:06:30,509 advocate advocating for your children in the doctor's 185 00:06:30,509 --> 00:06:32,830 office when they can't really advocate for themselves 186 00:06:32,830 --> 00:06:34,910 quite yet. Yes. And then and just to 187 00:06:34,910 --> 00:06:36,670 go back a little bit, there has been 188 00:06:36,670 --> 00:06:38,029 a lot of work is being done in 189 00:06:38,029 --> 00:06:39,330 the women's and hemophilia 190 00:06:39,870 --> 00:06:42,029 B community to remove the stigma and to 191 00:06:42,029 --> 00:06:44,685 remove the spline spots in the healthcare community 192 00:06:44,685 --> 00:06:46,604 about the fact that women don't bleed because 193 00:06:46,604 --> 00:06:48,625 they, in fact, do. Tell us about how 194 00:06:48,764 --> 00:06:50,064 advocating for your children, 195 00:06:50,524 --> 00:06:51,665 you know, in these initial 196 00:06:52,125 --> 00:06:54,704 years of their lives got you connected to, 197 00:06:55,084 --> 00:06:57,024 the Coalition for Hemophilia b. 198 00:06:57,959 --> 00:07:00,039 So a dear friend of ours told us 199 00:07:00,039 --> 00:07:00,939 about the coalition. 200 00:07:01,800 --> 00:07:04,360 Our son was eight years old, and we 201 00:07:04,360 --> 00:07:06,439 reached out. We went to our first meeting 202 00:07:06,519 --> 00:07:09,019 or to our first symposium, and 203 00:07:09,334 --> 00:07:12,375 it was amazing. We met so many people. 204 00:07:12,375 --> 00:07:14,855 Everybody was kind. They kept coming up to 205 00:07:14,855 --> 00:07:17,654 us, asking, you know, our names and, like, 206 00:07:17,654 --> 00:07:20,055 you know, we at that time, we did 207 00:07:20,055 --> 00:07:21,814 not take our daughter because she was only 208 00:07:21,814 --> 00:07:24,154 three, but we took our son. And 209 00:07:24,979 --> 00:07:27,139 it was just amazing because everyone wanted to 210 00:07:27,139 --> 00:07:29,379 know, like, his diagnosis, and we've heard different 211 00:07:29,379 --> 00:07:30,519 stories from different 212 00:07:31,220 --> 00:07:32,519 individuals. And 213 00:07:33,779 --> 00:07:35,779 it was just so welcoming. And it was 214 00:07:35,779 --> 00:07:36,439 it was 215 00:07:37,060 --> 00:07:39,699 empowering because we went into this one room 216 00:07:39,699 --> 00:07:41,824 and they were discussing about and they were 217 00:07:41,824 --> 00:07:44,305 like, does anybody have any questions or anything 218 00:07:44,305 --> 00:07:46,464 they wanna ask the doctors or people that 219 00:07:46,464 --> 00:07:48,865 were speaking? And I stood up and I 220 00:07:48,865 --> 00:07:50,785 asked, should my daughter have factor at home? 221 00:07:50,785 --> 00:07:52,944 And, you know, there's, like, 800 people in 222 00:07:52,944 --> 00:07:55,290 the room, but every single person said yes. 223 00:07:55,449 --> 00:07:56,189 A resounding yes. 224 00:07:57,370 --> 00:07:59,949 It was yes. Yeah. And I 225 00:08:00,490 --> 00:08:03,210 literally after we were done with that session, 226 00:08:03,210 --> 00:08:05,129 I went out. I sat down. I called 227 00:08:05,129 --> 00:08:05,629 my, 228 00:08:06,330 --> 00:08:08,410 HTC, and I'm like, I need a meeting 229 00:08:08,410 --> 00:08:10,394 with the head doctor next week. 230 00:08:11,194 --> 00:08:12,794 And I did have a meeting with the 231 00:08:12,794 --> 00:08:13,294 head 232 00:08:13,995 --> 00:08:16,714 doctor at the center we went to, and 233 00:08:16,714 --> 00:08:18,974 my daughter had Factor then at the house 234 00:08:19,115 --> 00:08:19,854 on hand. 235 00:08:20,314 --> 00:08:21,854 And if it wasn't for them 236 00:08:22,314 --> 00:08:23,995 pushing me and making me feel like I 237 00:08:23,995 --> 00:08:25,949 could make a stance to get it, 238 00:08:26,590 --> 00:08:28,110 I I don't even know where we would 239 00:08:28,110 --> 00:08:29,710 be. Yeah. And I I think what you've 240 00:08:29,710 --> 00:08:31,490 done is you've highlighted so beautifully 241 00:08:32,029 --> 00:08:34,429 what the Coalition for Hemophilia b does. Right? 242 00:08:34,429 --> 00:08:36,929 It it welcomes you into a community, 243 00:08:37,389 --> 00:08:39,754 and then it educates you on what you 244 00:08:39,754 --> 00:08:41,115 need to know that you can so that 245 00:08:41,115 --> 00:08:42,254 you can then advocate 246 00:08:42,875 --> 00:08:44,414 for your children or yourself 247 00:08:45,195 --> 00:08:47,695 with the doctors who are in charge of 248 00:08:47,914 --> 00:08:49,934 what you need, right, for a healthy, 249 00:08:50,394 --> 00:08:52,634 long life. So I I think just I 250 00:08:52,634 --> 00:08:54,554 wanted you to just maybe talk a little 251 00:08:54,554 --> 00:08:55,294 bit about 252 00:08:55,889 --> 00:08:58,370 the uncertainty and the nervousness of going to 253 00:08:58,370 --> 00:08:59,889 the symposium for the first time because I 254 00:08:59,889 --> 00:09:01,110 know for a lot of families, 255 00:09:01,490 --> 00:09:03,569 it's really difficult to go. And if you 256 00:09:03,569 --> 00:09:04,549 have any advice 257 00:09:05,089 --> 00:09:07,990 about getting yourself to step through that door 258 00:09:08,049 --> 00:09:09,569 and get yourself out to one of these 259 00:09:09,569 --> 00:09:11,894 community events. To be a part of the 260 00:09:11,894 --> 00:09:15,115 community, like, when you start going to events, 261 00:09:15,815 --> 00:09:17,915 I know it's overwhelming because you think, 262 00:09:18,375 --> 00:09:19,195 oh my goodness. 263 00:09:19,654 --> 00:09:21,254 What are they gonna you know, what am 264 00:09:21,254 --> 00:09:22,934 I gonna learn? You know, who am I 265 00:09:22,934 --> 00:09:24,940 gonna meet? You feel alone when you go 266 00:09:24,940 --> 00:09:26,940 into these things, but when you leave, you 267 00:09:26,940 --> 00:09:28,240 come out as family. 268 00:09:28,940 --> 00:09:30,860 And we were nervous going to the very 269 00:09:30,860 --> 00:09:32,460 first one. But like I said, by the 270 00:09:32,460 --> 00:09:34,720 time we left, we had so much information 271 00:09:34,860 --> 00:09:36,700 and met so many friends 272 00:09:38,004 --> 00:09:39,065 and made connections 273 00:09:39,845 --> 00:09:42,245 that now a few years later, we have 274 00:09:42,245 --> 00:09:44,565 people that we consider family all over the 275 00:09:44,565 --> 00:09:45,065 country. 276 00:09:45,445 --> 00:09:46,825 Mhmm. So it's important 277 00:09:47,764 --> 00:09:48,985 to help your child 278 00:09:49,509 --> 00:09:51,909 to definitely go or yourself, if you don't 279 00:09:51,909 --> 00:09:53,929 have children, to go to these events 280 00:09:54,389 --> 00:09:57,129 because they're only gonna help you. You know? 281 00:09:57,750 --> 00:10:01,209 So you can help yourself, basically. Mhmm. Yeah. 282 00:10:01,764 --> 00:10:04,245 Yeah. No. It's so well said. So I 283 00:10:04,245 --> 00:10:06,884 guess as you continue sharing what you've learned, 284 00:10:06,884 --> 00:10:08,725 can you share some, like, maybe some things 285 00:10:08,725 --> 00:10:10,644 you wish you knew from the beginning that 286 00:10:10,644 --> 00:10:13,044 you now know? Maybe specifically over how to 287 00:10:13,044 --> 00:10:14,024 talk to the doctors 288 00:10:14,379 --> 00:10:17,579 or maybe insurance coverage, proper medications, maybe how 289 00:10:17,579 --> 00:10:18,879 to get your voice through 290 00:10:19,259 --> 00:10:21,179 those channels so that you are being heard? 291 00:10:21,179 --> 00:10:23,819 I think it and that stems back to 292 00:10:23,819 --> 00:10:26,299 going to events. I think it almost have 293 00:10:26,299 --> 00:10:26,459 to 294 00:10:27,394 --> 00:10:28,995 you have to know what you're you have 295 00:10:28,995 --> 00:10:30,835 to know the information before you go in, 296 00:10:30,835 --> 00:10:32,695 especially with a doctor. Like, 297 00:10:33,235 --> 00:10:35,794 if you go to event and you hear 298 00:10:35,794 --> 00:10:37,794 about that there's different products or this and 299 00:10:37,794 --> 00:10:39,509 that, it's nice that you have the different 300 00:10:39,509 --> 00:10:41,350 pamphlets or things that you can go in 301 00:10:41,350 --> 00:10:43,269 and show them what you learned at the 302 00:10:43,269 --> 00:10:43,769 events. 303 00:10:44,389 --> 00:10:46,389 And I think it's important to always write 304 00:10:46,389 --> 00:10:48,629 everything down. So when you go in the 305 00:10:48,629 --> 00:10:50,470 room, you might get flustered and not know 306 00:10:50,470 --> 00:10:51,990 what to say because then the doctor's gonna 307 00:10:51,990 --> 00:10:53,190 be like, well, no. This is what we 308 00:10:53,190 --> 00:10:54,794 need to stay on and this and that. 309 00:10:54,954 --> 00:10:57,214 And I understand that they have the degree, 310 00:10:57,434 --> 00:10:59,674 but that doesn't always mean that they are 311 00:10:59,674 --> 00:11:01,914 correct, and they need to be able to 312 00:11:01,914 --> 00:11:02,894 listen to you. 313 00:11:03,195 --> 00:11:05,434 And if you have everything written down and 314 00:11:05,434 --> 00:11:05,934 ready, 315 00:11:06,315 --> 00:11:08,070 then even if you get a little flustered, 316 00:11:09,029 --> 00:11:10,736 you're able then to settle yourself and go 317 00:11:10,736 --> 00:11:12,149 back and read what you need to to 318 00:11:12,149 --> 00:11:13,850 them. So you can get your point across. 319 00:11:14,389 --> 00:11:16,149 Yeah. Yeah. That's really smart. And, you know, 320 00:11:16,149 --> 00:11:18,070 not for nothing, when our first child was 321 00:11:18,070 --> 00:11:18,570 born, 322 00:11:19,590 --> 00:11:21,894 I did have a list of things that 323 00:11:21,894 --> 00:11:23,735 I was supposed to say because I knew 324 00:11:23,735 --> 00:11:25,495 my wife would not be in a position 325 00:11:25,495 --> 00:11:27,335 to advocate for herself necessarily, and I was 326 00:11:27,335 --> 00:11:29,335 gonna be way too emotional and a mess 327 00:11:29,335 --> 00:11:30,475 to be able to eloquently 328 00:11:30,855 --> 00:11:32,295 get a point across. Right? So I did 329 00:11:32,295 --> 00:11:34,080 have that list. So, yeah, very, very good 330 00:11:34,080 --> 00:11:35,840 advice there. Something we talked about, you know, 331 00:11:35,840 --> 00:11:38,000 before we did this recording was what you 332 00:11:38,000 --> 00:11:40,399 tell new families about building a plan. Can 333 00:11:40,399 --> 00:11:41,919 we can you talk a little bit about 334 00:11:41,919 --> 00:11:45,460 that? Things to help your children is camp. 335 00:11:45,600 --> 00:11:46,820 Camp is a 336 00:11:47,305 --> 00:11:49,965 huge thing with my children. They have learned 337 00:11:50,024 --> 00:11:52,985 so much at camp. They've made close friends. 338 00:11:52,985 --> 00:11:54,125 They learned how 339 00:11:54,665 --> 00:11:57,144 my daughter is still learning, but she ended 340 00:11:57,144 --> 00:11:59,384 up pretty much sticking herself for the first 341 00:11:59,384 --> 00:12:01,325 time at camp. My son has been 342 00:12:02,059 --> 00:12:04,539 from Symposium and then also at camp learning 343 00:12:04,539 --> 00:12:05,919 how to infuse himself, 344 00:12:06,620 --> 00:12:08,860 and it just builds confidence and know that 345 00:12:08,860 --> 00:12:10,879 they're not the only ones out there. 346 00:12:12,059 --> 00:12:13,899 And I think with the school, it's kinda 347 00:12:13,899 --> 00:12:15,679 the same way when you 348 00:12:16,454 --> 00:12:17,914 take the information to them 349 00:12:18,294 --> 00:12:20,315 and fill them in on what's going on. 350 00:12:20,694 --> 00:12:23,174 And your kid feels strong enough too that 351 00:12:23,174 --> 00:12:25,174 when they can go into the classroom, like, 352 00:12:25,174 --> 00:12:27,095 Cooper has went in and told his friends 353 00:12:27,095 --> 00:12:29,735 about hemophilia and spoke to his class about 354 00:12:29,735 --> 00:12:31,549 it. And my daughter 355 00:12:31,850 --> 00:12:33,769 has said things to her friends. It just 356 00:12:33,769 --> 00:12:36,090 helps it makes them feel, one, not alone 357 00:12:36,090 --> 00:12:37,690 when they go to camp and different things, 358 00:12:37,690 --> 00:12:40,009 but also proud of themselves. Like, yeah, they 359 00:12:40,009 --> 00:12:42,090 have this, but they show how they can 360 00:12:42,090 --> 00:12:44,784 push through, and they're still a normal person 361 00:12:44,784 --> 00:12:47,365 even still having, you know, hemophilia b. 362 00:12:47,745 --> 00:12:49,345 Yeah. Yeah. And I guess maybe talk a 363 00:12:49,345 --> 00:12:51,424 little bit about, as a parent, what that 364 00:12:51,424 --> 00:12:53,105 feels like because we know that's a huge 365 00:12:53,105 --> 00:12:55,664 transition for parents. There's going to come a 366 00:12:55,664 --> 00:12:58,159 day where your child is going to be 367 00:12:58,159 --> 00:12:59,839 closer to an adult, and they're gonna have 368 00:12:59,839 --> 00:13:01,120 to do all of this on their own. 369 00:13:01,120 --> 00:13:03,120 Right? So I think even at this early 370 00:13:03,120 --> 00:13:04,639 age, maybe you start to see some of 371 00:13:04,639 --> 00:13:06,559 these signs of ownership. Can you talk a 372 00:13:06,559 --> 00:13:08,339 little bit about that just as a parent? 373 00:13:09,704 --> 00:13:11,464 It is I would have to say it's 374 00:13:11,464 --> 00:13:13,404 a double edged sword. Sure. It 375 00:13:14,664 --> 00:13:16,444 I'm very proud of my son. 376 00:13:16,745 --> 00:13:17,565 I know that 377 00:13:18,184 --> 00:13:19,464 if he had to do it, he could 378 00:13:19,464 --> 00:13:21,144 do it all on his on his own, 379 00:13:21,144 --> 00:13:23,485 which is wonderful, and I'm proud of that. 380 00:13:24,105 --> 00:13:26,740 But, also, it's it's hard too in a 381 00:13:26,740 --> 00:13:28,279 way because, you know, 382 00:13:29,779 --> 00:13:31,540 this has been you know, his whole life 383 00:13:31,540 --> 00:13:33,379 is what we have done. This is how 384 00:13:33,379 --> 00:13:35,059 we do it, you know, and then to 385 00:13:35,059 --> 00:13:35,559 hand 386 00:13:36,420 --> 00:13:38,820 the reins over, it it's hard, but you 387 00:13:38,820 --> 00:13:40,420 want that because I want him to live 388 00:13:40,420 --> 00:13:41,934 a a full life and know how to 389 00:13:41,934 --> 00:13:44,014 do it and travel and live on his 390 00:13:44,014 --> 00:13:46,115 own. He has to know how to infuse. 391 00:13:46,495 --> 00:13:49,375 Mhmm. Absolutely. So well, thank you so much 392 00:13:49,375 --> 00:13:50,735 for being here. And I guess if you 393 00:13:50,735 --> 00:13:54,240 could just leave listeners or maybe with some 394 00:13:54,240 --> 00:13:56,559 advice about what to do when you feel 395 00:13:56,559 --> 00:13:57,540 overwhelmed, maybe 396 00:13:57,919 --> 00:13:59,679 what you would have told yourself back at 397 00:13:59,679 --> 00:14:01,120 the beginning of this now that you know 398 00:14:01,120 --> 00:14:02,019 what you know now. 399 00:14:03,040 --> 00:14:05,519 I would have to say definitely join the 400 00:14:05,519 --> 00:14:06,740 Coalition for Hemophilia 401 00:14:07,040 --> 00:14:07,540 b. 402 00:14:07,875 --> 00:14:09,634 I would I would have known about them 403 00:14:09,634 --> 00:14:11,875 earlier on because I wouldn't have felt so 404 00:14:11,875 --> 00:14:13,794 alone, my husband and I, and we would 405 00:14:13,794 --> 00:14:16,835 have been able to maybe direct how things 406 00:14:16,835 --> 00:14:19,415 were going earlier on in my son's care 407 00:14:19,889 --> 00:14:21,889 if we woulda had the community that we 408 00:14:21,889 --> 00:14:24,550 have now. And the friendships that we have 409 00:14:24,610 --> 00:14:26,769 are very dear to us. So I would 410 00:14:26,769 --> 00:14:27,269 say 411 00:14:27,889 --> 00:14:30,470 even if you're not able to come to 412 00:14:30,610 --> 00:14:32,769 coalition meeting, if you're not ready for that, 413 00:14:32,769 --> 00:14:35,065 at least go to your local chapter and 414 00:14:35,065 --> 00:14:37,245 start going to events because having 415 00:14:37,625 --> 00:14:38,444 people that 416 00:14:38,745 --> 00:14:41,065 live similar lives and understand what you're going 417 00:14:41,065 --> 00:14:42,444 through is very important. 418 00:14:42,985 --> 00:14:44,985 Well, thanks again for your message. And this 419 00:14:44,985 --> 00:14:47,460 has been Boundless b, the Hemophilia b Podcast, 420 00:14:47,540 --> 00:14:49,379 a podcast standing with you from a family 421 00:14:49,379 --> 00:14:52,200 like yours presented by the Coalition for Hemophilia 422 00:14:52,259 --> 00:14:54,759 B and in partnership with Balancing Life's Issues. 423 00:14:54,899 --> 00:14:57,220 And don't forget to check out hemob.org. 424 00:14:57,220 --> 00:14:59,000 There's all kinds of amazing resources, 425 00:14:59,540 --> 00:15:00,360 but specifically 426 00:15:00,980 --> 00:15:03,735 you can navigate to upcoming events to check 427 00:15:03,735 --> 00:15:05,335 out what kind of events are happening so 428 00:15:05,335 --> 00:15:06,875 that you can get involved in the community. 429 00:15:07,095 --> 00:15:08,794 And thank you again for your time, Mandy. 430 00:15:09,095 --> 00:15:11,390 Thanks for having me. Of course. Until next 431 00:15:11,390 --> 00:15:12,370 time, everybody. Take 432 00:15:15,711 --> 00:15:16,211 care.