00:00My rare condition is 1 in 50 million, and I live my life with 15 screws in my head.
00:05The thing on my head is on a halo, and it is stretching out my spine.
00:11My spine is curved into a S, so it's compressing my right lung.
00:16I am not able to have scoliosis surgery, so my halo is permanent, and I'll have it for the rest of my life.
00:22The halo has completely changed my life.
00:25It's allowed me to be more independent and do things that I thought I would never be able to do.
00:32So this is my CPAP machine that I use when I am sleeping.
00:38The muscular dystrophy affects my lungs, and during the night when I'm sleeping, I stop breathing.
00:44So this stops that from happening.
00:47My condition is muscular dystrophy and scoliosis.
00:50My muscular dystrophy is luchenne, and it mainly occurs in males.
00:55It's very rare in females, like 1 in 50 million.
00:59I've never met anyone else with my condition, in a female.
01:03There is no cure for the condition that I have, and it is slowly progressive over time.
01:10So these are the medicines that I take daily.
01:13Muscular dystrophy affects a lot of things in my body, so I depend on medicine, you know, to live every day.
01:21There were no signs at all of the Duchenne's muscular dystrophy when I was born.
01:26My mother didn't realize anything until I was around 2.
01:31I was constantly falling down when I was walking, and I wasn't catching myself, so she ended up contacting the doctor about it.
01:40They did inform my parents that I wouldn't make it past 7 years old.
01:44So the thing on my head is called a halo, and it is for my scoliosis.
01:51It's trying to straighten it out as much as possible with the traction, which is what I'm being pulled with.
01:59Scoliosis is a disease that affects your spine.
02:03My spine is curved into a S, and it is all leaning on my right side, so it's compressing my right lung, like as if someone's pushing on it.
02:15I have had this halo for 15 years so far.
02:19I got it when I was 11.
02:21It was surgically placed, and the screws are, like, screwed into the skin pushed against the skull.
02:28I am not able to have scoliosis surgery due to my muscular dystrophy, so my halo is permanent, and I'll have it for the rest of my life.
02:37I do not feel the halo, like any pain from the halo, but I do feel the tension against my spine, so it's just a stretch, basically.
02:45Growing up with the halo, it most definitely made me feel very different from other people.
02:53I was very self-conscious about my halo and what people were going to say or kids were going to say.
02:59Now when I see myself in the mirror, I've learned to accept me for me.
03:04Maybe around 21, I finally came to terms with, you know, this is how it's going to be, and one day it will get worse, but we're going to live on until that day comes.
03:14Hello.
03:16Sleep good?
03:17Yeah.
03:18You ready for breakfast?
03:20Let me put you in your walker, okay?
03:21I need help from basically anyone around.
03:25My mother is my support throughout every day.
03:29So the walker is to help with moving my legs and getting me out of the chair from the sitting so I could stretch and stuff.
03:39And I like to use the walker to eat at the table.
03:41More?
03:42Yeah.
03:42There.
03:45There?
03:45Mm-hmm.
03:46I have leaned on my family a lot.
03:50It's been tough.
03:51It's been a journey.
03:52I don't think I could live without my family or be the person that I am without them.
03:56Oh, ready yet?
03:58Hey, son.
03:59How are you doing?
04:00All right, all right.
04:01All right, you ready to eat?
04:02Yes, I am.
04:04Hey, baby.
04:04How are you doing?
04:05Hey.
04:06How are you doing?
04:07Okay.
04:07When they told me she would live past seven, it just hit me very hard.
04:12They took everything in to keep on going.
04:15And then when they actually put the halo on, we had to stay there for three months at the hospital.
04:23And for me, it was very stressful because you know how you don't want your children to be in no pain.
04:28It was a pretty risky surgery, so we were all kind of on edge about it, but we knew it had to be done.
04:36Her back was curved pretty good.
04:38At the time, you know, we were stressed out, but it worked out for her, and that's the blessing that we did have, so I'm sitting here with her today.
04:45I could tell it bothered her at times, you know, people staring all the time when we'd go to places, but I think she motivates herself.
04:55She's a strong young lady, and she likes to live.
04:59Over the time, she grew to understand and see that life is what it is, and she's enjoying it and living to her best and doing what she likes to do.
05:08She's definitely the strongest person I know, where she's been to my children.
05:12Even with her condition, like, she's been the best aunt that you could ask for, literally.
05:18Has the biggest will to thrive and keep living.
05:22She could be an inspiration to others, show them that you still live life to the fullest, regardless of what conditions.
05:29I started posting about a year ago.
05:33I've always wanted to just inspire one person.
05:36Like, I used to tell myself, if I can inspire one person, like, my life is complete.
05:41Like, it's my goal.
05:43I was terrified of the backlash and everything, or what people would say.
05:50Hey!
05:52How are you?
05:52Good, how are you doing?
05:55It's been a while.
05:56My friend, Brianna, she's seen it all, and she's gave me the confidence to continue doing what I'm doing and enjoying myself.
06:02I have an idea.
06:04We should go live and, like, say hi to the fans and everything.
06:07Yeah, we can do that.
06:08Everybody.
06:09We can do that.
06:10See who comes on.
06:11I knew she had been on TikTok for a little while.
06:14Being on that platform has its ups and downs.
06:17Someone said, it's sad she can't stand up for herself.
06:21This looks like an execution.
06:23Does she want to play hangman?
06:25And then there was one time I said, goddamn it.
06:29Nobody want to see this.
06:31Why is it on my feed?
06:33So we get stuff like that.
06:36When people are leaving those mean comments on her TikTok, it makes me very angry.
06:42It's just a bunch of haters around the world.
06:45I don't like it at all.
06:46A message that I have for people that have judgment is, you can never make me hate my life.
06:52You can never make me hate myself.
06:54And you give me the energy that I need to keep going.
06:59I'm just glad that she's finally getting it out and telling everybody, like, hey, this is me. Accept me for me.
07:06And she's making a difference.
07:07Proud of her.
07:08I am glad to be born different because it makes me unique.
07:13And it makes me who I am.
07:15Being different is okay.
07:16There's nothing wrong with it.
07:18I get asked that question.
07:20If I could change my life or something about me, would I?
07:23And I honestly can answer that and say no.
07:26Because I was put on this earth this way for a reason.
07:29I have a great life at the end of the day.
07:31And I'm blessed.
07:32And I really don't think I would change anything.
07:34It's not easy, but I promise to never give up.
07:38Always remember, it's just a bad day, not a bad life.
07:41It's just not a bad life.
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