Latest / OneLegUpAlex Media / On Rare Disease Day 2024, Be Inspired to Have One Leg Up With Your Rarities 2-28-24

Transcript

On Rare Disease Day 2024, Be Inspired to Have One Leg Up With Your Rarities 2-28-24 · OneLegUpAlex Media

• 0:02
  Here's your host, Alex Darren. All Right, well, I don't always
• 0:08
  talk about this, but it's worth talking about today because on my notes it
• 0:13
  says that today is Rare Disease Day. And if anybody wonders how rare of
• 0:18
  a breed yours truly is, I guess we could say I'm one in ten
• 0:26
  thousand to forty thousand newborns. That's right, one out of ten thousand to
• 0:33
  forty thousand newborns are born with the condition called voter syndrome. Now I don't
• 0:40
  always talk about this because that's not my life. I don't live in that
• 0:43
  condition. I have Votters, but in ninety percent of the time vodters doesn't
• 0:49
  have me. But I figured on Rare Disease Day, give a little love
• 0:52
  to the adapting feature of one leg up with Alex Garrett and tell you that,
• 0:58
  yes, votter is as rare a disease as I am. Sometimes feel
• 1:04
  like a rare breed on this earth. And the first six hours, my
• 1:11
  mom will tell you, were very difficult when they were assessing exactly what I
• 1:17
  had with organs out of the body, just a couple, as well as
• 1:23
  the one leg as well as no way to do number two if you will,
• 1:29
  and all of those causes minus thank god, the cardiac side of voter
• 1:38
  hit me in childbirth. I guess you'd say, But if the doctors who
• 1:48
  were able to scope out that vodder for the nick you doctors that spent those
• 1:53
  days, seventy seven days getting me right, those first few hours, making
• 1:57
  sure that I could be here today and talk to you on Rare Disease Day
• 2:00
  in twenty twenty four. Thank you means the world to now talk about it,
• 2:07
  because hey, you know what, you might have a family member that
• 2:09
  has bodder disease, and my thought is, don't be scared of it.
• 2:17
  If you have a child who has syndrome, I would say, go with
• 2:24
  it, help him or her live their best life and love on them is
• 2:32
  as much as my parents did. And do I want to get to some
• 2:42
  more on bodders because maybe maybe you want to know more. According to the
• 2:51
  Rare Diseases dot Org, I'm gonna put this up on the page. The
• 2:54
  acronym vodder originally included vertebral anal tracheoesophageo. I've had a savagela treasia up here
• 3:04
  as well, radio and renal. I have one kidney anomalies, and it
• 3:10
  was subsequently redefined for cardiac limb defects, one leg and other radio normalities.
• 3:22
  VECTOROAL is currently the most frequented used term of this. It's not hereditary,
• 3:32
  and it's only occurring in a single individual in any giving family. There are
• 3:38
  resources, though, how about that to help you in coping with the child's
• 3:49
  diagnosis, in living with this diagnosis, to make sure that you might have
• 3:57
  the diagnosis of voutor, but it doesn't have you. It doesn't have you.
• 4:02
  That's what I want to tell you today on rare Disease Day. We
• 4:09
  may be labeled as having this condition and that condition and this condition, But
• 4:14
  at the end of the day, are we overcoming that condition? Are we
• 4:17
  living out our best life with this condition, monitoring it, taking care of
• 4:24
  it? Could we do better? I sure as ill can do better.
• 4:30
  But don't think for one moment if you were diagnosed with any kind of rare
• 4:33
  disease you can't live with it, Because I believe you can. I believe
• 4:38
  you can still live your life. You've just got to be informed about it.
• 4:42
  You've got to do the research about it. Like my mom has tons
• 4:48
  of research and that was the day we'd have Google. I mean the nineties,
• 4:53
  we'd have a Google. She had to talk to parents, she had
• 4:56
  to talk to doctors, she had to go out there and find the resources
• 4:59
  herself. And are we all glad she did? And aren't I blessed that
• 5:04
  she did? That was a huge part of this thirty two year journey continuing.
• 5:19
  There are connections, uh, like the e A T e F.
• 5:28
  Child and Family Sport Connection, Inc. At info at E A T e
• 5:32
  F dot org. There's a thing called the pull Through Network. I've never
• 5:38
  heard of that till just researching it now, Birth defect Research for Children staff
• 5:46
  at Birthdefects dot org. So there are even the Ola Foundation Foundation only O.
• 5:57
  E. L. E. Y Foundation, Bishop J at mail dot
• 6:00
  AMC dot edu. So if you feel like you're alone in this process,
• 6:06
  in this journey, and maybe haven't heard from others who have VODDER, I
• 6:12
  want to tell you today you are not alone. And if you're watching this,
• 6:17
  maybe you were meant to watch this. If you're listening to this on
• 6:19
  the podcast, maybe you were meant to listen to this today. Maybe you
• 6:25
  have a rare disease that freaks you then f that maybe you have a rare
• 6:30
  disease that you feel is incurable, and maybe we shouldn't stop, shouldn't look
• 6:35
  for a cure per se, but look for ways to adapt to what we
• 6:42
  have. The colostomy the biggest adaptation that I could ever be thankful that they
• 6:47
  decided to do. Yeah, it might leak at times, Yeah it might
• 6:53
  give me be a pin in the ass put intendent, I guess, But
• 6:58
  at the end of the day, it's saved my life and it saves thousands
• 7:01
  of other kids' lives and adults lives. I don't believe I was put on
• 7:10
  this earth and my parents didn't take the time to raise me to just soak
• 7:16
  in my story and not tell it. I will never identify as someone with
• 7:23
  a rare disease, but I have something that one in about forty thousand babies
• 7:30
  are born with. So when you ask if I'm a rare breed and you
• 7:34
  say I'm a rare breed or I think I'm a rare breed, it's rare
• 7:39
  than you think, and I'm proud of that. On the Alex Scaret pod Cast Network