I’m 18 - But I Only Weigh 35lbs | BORN DIFFERENT
Kaylee, from Ohio, has progeria, an accelerated ageing disease which means that at age 18 she stands at 3ft 8in tall and weighs only 35lbs. The ultra-rare nature of progeria, which has an average life expectancy of around 13, means that people online often mistake her for other people with the condition who have since passed away - but Kaylee is very much still here and living a full life. Having taken part in drug trials to help slow the ageing process, Kaylee is finishing high school this year and applying to college, and has had hip surgery which means she's more mobile. In this episode Kaylee shows off her incredible artwork and introduces us to two of her best friends.
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00:00 Progeria is a rapid aging disease.
00:03 I'm 18 years old.
00:04 I am 3'8" and I'm 35 pounds.
00:08 My progeria does not define me.
00:10 So I've gotten a lot of comments about me passing away,
00:15 like people saying rest in peace,
00:18 but that I'm still here.
00:19 - Do you wanna look at some of these old albums I found?
00:26 - Yeah.
00:27 - Look how little you are there.
00:30 - And I look about the same, just chubbier.
00:32 (laughing)
00:34 - When you were born, you were six pounds and five ounces.
00:37 You were tinier, but it's not super, you know,
00:41 super, super tiny, but you were smaller than your brothers.
00:45 When I was pregnant with Kaylee, she was my fourth child.
00:48 I had three other boys and I had,
00:50 it felt just like the pregnancy with them.
00:52 I noticed no difference at all.
00:55 - Progeria is a rapid aging disease.
00:58 It causes you to lose your hair
01:00 and makes you smaller, age faster.
01:03 - When Kaylee was diagnosed, I'd never heard of progeria.
01:07 So I was, I was scared.
01:10 When she was born, they didn't know anything was wrong.
01:13 It wasn't until she was about six months.
01:16 We went to the doctor and she was nine pounds, six ounces.
01:18 They really kind of started freaking out a little bit.
01:21 Finally, right after she was a year,
01:24 that's when they finally diagnosed her with progeria,
01:26 after we'd already seen specialists
01:29 for about six months, different ones.
01:31 - Around fifth grade was when I stopped growing.
01:34 I am three eight and I'm 35 pounds.
01:37 I was three nine, was I three nine?
01:41 - You were about three nine until you had your hip surgery.
01:43 - Yeah, then they cut me down an inch.
01:45 I thought they should have gave me an inch.
01:49 I had my hip surgeries because my hips were dislocating.
01:54 I can just about walk as far as like a mile or so.
01:58 I have to use a wheelchair.
02:00 If I'm like with a group of people
02:03 and we're walking a far distance,
02:06 obviously it's hard for me to keep up.
02:09 - Here are the photos from your clinical trial.
02:11 - I think they're getting ready for a blood draw.
02:13 The experimental drug that I was on,
02:16 it helped a lot of progeria kids.
02:19 It slows down the aging and it helps me live longer.
02:24 And all that, I mean, it does have a lot of side effects
02:27 with like stomach problems and all that stuff,
02:30 but it's still worth it.
02:32 I really don't like being pitied
02:34 just because I've had this condition my whole life.
02:38 It's nothing new to me.
02:40 When I first started posting on social media,
02:43 it was definitely elementary school.
02:44 Every time someone like with progeria passes,
02:48 I'll get like the amount of comments
02:50 of rest in peace goes way up.
02:53 My comments are like arguing
02:54 about whether I'm alive or not.
02:56 Some of them even argue with me,
02:57 I'll comment back and be like,
02:58 "No, I'm still alive."
02:59 And they're like, "No, you're not."
03:00 I'm like, "What?"
03:01 (laughs)
03:02 I'm still here.
03:04 My progeria does not define me.
03:06 I just try to post positivity
03:09 and show people my personality
03:12 and that even with progeria,
03:15 doesn't make us any different.
03:17 Some of the nice feedback I get on my social media
03:20 is just people calling me an inspiration.
03:24 And some people say that I'm pretty.
03:25 I'm meeting my friend Faith
03:31 and also my friend Kaylee.
03:33 I've known these friends since I was in kindergarten.
03:36 So we're very close and we hang out every weekend.
03:39 Who do I look up to the most?
03:41 I guess everybody.
03:42 I'm only three eights, so everybody's above me.
03:45 I look up to them all.
03:47 (laughs)
03:49 I do have my license,
03:51 so I am looking forward to when I finally get my van
03:54 modified to my height so that I can be more independent.
03:58 - Hey. - Hey.
04:05 - How are you?
04:06 - Good.
04:09 - Ooh, that looks good. - Thank you.
04:11 - You're welcome. - Ooh, those look so good.
04:12 - Those do look really good.
04:13 - Didn't we meet in hip hop?
04:15 - Yes, it was hip hop.
04:18 - Cheer dance, we did have cheer dance.
04:20 - And we killed it.
04:21 - Yeah, how old were we then?
04:23 - It had to be like first grade kindergarten.
04:26 - Yeah, yeah.
04:28 - I believe like it's just right when I met you,
04:32 like we definitely like clicked right away.
04:34 And I felt like we're gonna be friends like forever.
04:36 And clearly we are.
04:39 - There's just like so many crazy memories.
04:40 I don't even know where to start.
04:42 Really long time ago, we had like big sleepovers
04:44 with like everyone on the team.
04:46 - Oh, you would always be the judge
04:49 in our like ugly dance offs or whatever.
04:53 And then you would have the like big microphone or whatever.
04:57 You would always be like, next up to the stage.
05:00 That was for fun.
05:01 Whenever I'm in a room with you, I'm just always laughing.
05:04 And many memories of just laughing.
05:07 - I just really appreciate how like passionate you are
05:11 about like whatever you do.
05:15 - I don't dance anymore because of my hips,
05:17 but I've been painting for about three years or so.
05:21 I like to just see what I can paint,
05:24 like kind of challenge myself to do something harder
05:27 and harder every time I paint.
05:29 - She wants people to like her for who she is.
05:32 I was talking to one of their teachers
05:34 and she said to me, I forgot Kaley even has progeria.
05:39 Like once you get to know her, you forget
05:40 because her personality is so big.
05:43 - My biggest goals for the future,
05:46 I guess is to just be independent
05:49 and be able to drive myself places, having a good job,
05:53 maybe possibly living on my own,
05:56 but my mom thinks I should live in the backyard,
05:59 like a tiny house.
06:00 I don't think that, but I go, I want more pets.
06:03 So that's why I want to move out so I can have more pets.
06:06 And I want to study human resources.
06:10 My attitude in life is just to be positive.
06:14 (upbeat music)
06:16 (upbeat music)