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 called a halo and it is stretching out my spine.
00:11My spine is curved into an S so it's compressing my right lung.
00:16I am not able to have scoliosis surgery so my halo is permanent
00:20and 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
00:28things that I thought I would never be able to do.
00:33So 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
00:43I stop breathing so this stops that from happening.
00:47My condition is muscular dystrophy and scoliosis.
00:50My muscular dystrophy is Duchenne 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
01:16in 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 two.
01:30I was constantly falling down when I was walking and I wasn't
01:35catching myself so she ended up contacting the doctor about it.
01:40They did inform my parents that I wouldn't make it past seven years old.
01:45So 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
01:57which is what I'm being pulled with.
01:59Scoliosis is a disease that affects your spine.
02:03My spine is curved into an S and it is all leaning on my right side
02:10so 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
02:33so my halo is permanent and I'll have it for the rest of my life.
02:36I do not feel the halo like any pain from the halo
02:40but I do feel the tension against my spine so it's just a stretch basically.
02:46Growing 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 gonna say or kids were gonna 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 gonna be
03:09and one day it will get worse but we're gonna live on until that day comes.
03:15Hello.
03:16Sleep good?
03:17Yeah.
03:18You ready for breakfast?
03:19Let 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
03:36so I could stretch and stuff and I like to use the walker to eat at the table.
03:41More?
03:42Yeah.
03:45Yeah?
03:46I have leaned on my family a lot.
03:50It's been tough.
03:50It'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 how you doing?
04:00All right all right.
04:01All right you ready to eat?
04:02Yes I am.
04:03Hey how you doing?
04:07Okay.
04:08When they told me she would live past seven it just hit me very hard.
04:12They took everything in to keep on going and then when they actually put the halo on
04:20we had to stay there for three months at the hospital and for me it was very stressful
04:25because you know how you don't want your children to be in no pain.
04:29It was a pretty risky surgery so we were all kind of on the edge about it but we knew it
04:35had 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
04:42blessing that we did have so sitting here with her today so.
04:46I could tell it bothered her at times you know people staring all the time when we go to places
04:52but I think she motivates herself.
04:54She's a strong young lady and she likes to live.
04:59Over the time she's been grew to understand and seeing that life is what it is and she's
05:04enjoying it and living to her best and doing what she likes to do.
05:08She's definitely the strongest person I know.
05:11What she's been to my children even with her condition like she's been the best aunt
05:16that you could ask for literally.
05:18Has the biggest will to thrive and keep living.
05:22She could be an inspiration to others.
05:24Show 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 like I used to tell myself.
05:37If I can inspire one person like my life is complete like it's my goal.
05:43I was terrified of the backlash and everything or what people would say.
05:50Hey how are you?
05:55Been a while.
05:56My friend Brianna she's seen it all and she's gave me the confidence to continue
06:00doing what I'm doing and enjoying myself.
06:02I have an idea we should go live and like say hi to the fans and everything.
06:08Everybody.
06:08We can do that.
06:09See 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.
06:18Someone said 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 guy that said god damn it nobody want to see this.
06:31Why is it on my feed?
06:34So 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.
06:46I don't like it at all.
06:47A message that I have for people that have judgment is you could never make me hate my
06:52life.
06:53You can never make me hate myself and you give me the energy that I need to keep going.
07:00I'm just glad that she's finally getting it out and telling everybody like hey this is
07:04me.
07:05Accept me for me and she's making a difference.
07:08Proud of her.
07:10I am glad to be born different because it makes me unique and it makes me who I am.
07:15Being different is okay.
07:17There's nothing wrong with it.
07:19I get asked that question if I could change my life or something about me would I?
07:24And I honestly can answer that and say no because I was put on this earth this way for
07:29a reason.
07:29I have a great life at the end of the day and I'm blessed and I really don't think I
07:34would change anything.
07:35It's not easy but I promise to never give up.
07:39Always remember it's just a bad day not a bad life.
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