27-YEAR-OLD Steffni was born with a condition that usually only affects males - in fact, her case is so rare that she is thought to be "one in 50 million." Duchenne muscular dystrophy (DMD) is a progressive condition that causes the muscles throughout the body to become weaker over time. When Steffni was diagnosed at three years old, her mom Sally was told that her daughter would not make it past seven years old and despite defying those expectations, her muscles were soon unable to support her spine and she developed severe scoliosis - her spine "curved into a 'S'" shape. This in turn put pressure on her right lung, so doctors suggested operating to glue 15 screws to her skull, connected to a circular band of metal around her head - known as a 'Halo'. The Halo could then be connected to cables above Steffni's head and pulled tight, to stretch out her spine and slow the progression of the scoliosis. Steffni was hoping to have surgery to correct the curve of her spine, but when this was deemed too risky for her, the Halo became permanent - Steffni will live with it for the rest of her life. While she struggled growing up with frequent stares and judgement due to the way the Halo looked, Steffni gradually learned to accept her situation with the support of her mom and brothers Trey and Tyrone. Now, Tyrone sees his sister "living to her best and doing what she likes to do" - with Trey putting this down to his sister being "the strongest person I know." And in typical Steffni fashion, she has found silver linings - like being able to take steps in her special "walker", something she never expected to be able to do as an adult. Now, Steffni's mission is to use her platform as a content creator to reach other young people with disabilities to remind them that if they are having a bad day, "it's just a bad day - not a bad life".
Follow Steffni:
https://www.tiktok.com/@steffswrld2.0
https://www.instagram.com/steffswrld_
Follow Steffni:
https://www.tiktok.com/@steffswrld2.0
https://www.instagram.com/steffswrld_
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FunTranscript
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.