INSEPARABLE SISTERS Alexis and Georgia were both born with cystic fibrosis (CF) - a genetic condition that causes excess mucus to build up in their lungs. For the first nine years of Alexis' life, doctors were unable to diagnose her, but when her younger sister Georgia was born, genetic testing had been updated to detect CF at birth. It was then that doctors gave the girls' parents grim news: at that time, because she had gone untreated for the first nine years of her life, Alexis was predicted to have a maximum life expectancy of 18 years old. Alexis' dad has since told her that hearing this "broke his heart". But it was not only the sisters' prognosis that the family had to deal with - doctors also advised that the sisters "stay 6ft apart from each other at all times" in order to minimise infection risk between the two. The family jointly decided that this would not be possible, but to this day, Alexis and Georgia understand the risks. Alexis told truly: "We've both had times where we could barely breathe" and the sisters have spent months in hospital between them. As a result, they do stay away from each other when one of them is sick - this, combined with improving treatments and a new life changing drug, has meant Alexis has outlived doctors expectations, having just turned 25. Georgia is hoping to start the new drug soon and the two are now able to turn their attention to their future together: "We are capable of being able to live a long and healthy life."
Follow Alexis:
https://www.tiktok.com/@lexschul
https://www.instagram.com/lexschul
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https://www.tiktok.com/@georgias..spam1
https://www.instagram.com/georgia._.457
Follow Alexis:
https://www.tiktok.com/@lexschul
https://www.instagram.com/lexschul
Follow Georgia:
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https://www.instagram.com/georgia._.457
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FunTranscript
00:00 My sister and I were both born with cystic fibrosis,
00:03 which causes excess buildup of mucus in our lungs.
00:06 We've both had times where we could barely breathe.
00:08 Doctors advised us to stay six feet apart
00:11 from each other at all times.
00:12 - We're told right from the beginning
00:14 that anybody with CF should not be anywhere near each other.
00:18 - I'm scared that we can pick up lung infections.
00:20 Those lung infections can be fatal.
00:22 - So this is my nebulizer and I do this twice daily.
00:28 And what it does is it helps break up the mucus in my lungs.
00:32 It takes about 30 to 45 minutes to do the whole treatment.
00:36 Cystic fibrosis is a life-threatening condition
00:40 that damages your lungs and your digestive system.
00:44 When my cystic fibrosis flares up and it's at its worst,
00:48 I would say it's hard to just breathe.
00:51 I'll wake up and before I even put my feet on the floor,
00:54 I feel tired because it feels like my body's attacking me.
00:58 So this is my vest.
01:00 I do this two times a day for about 15 minutes.
01:02 And what it does is it shakes your whole body
01:05 and especially like your lung area
01:07 that breaks up extra mucus and helps me expel it.
01:11 It can be frustrating having to do all this
01:15 before my day even starts,
01:17 but I've been doing this since I was nine years old.
01:19 So now I'm pretty used to it.
01:21 For the first nine years of my life,
01:23 doctors thought I had really bad asthma
01:25 and they thought I was lactose intolerant.
01:28 I know that it really affected my parents
01:30 because they were constantly taking me back and forth
01:33 to different doctors,
01:34 just trying to figure out what was wrong with me.
01:37 Hi.
01:37 - How you doing?
01:41 - Good, how are you?
01:42 - I'm good.
01:42 - When my sister was born,
01:45 she had the mandatory newborn testing
01:48 and it came back that she had cystic fibrosis.
01:50 They instantly knew that was exactly what I had.
01:53 How worried were you when the doctors told you
01:55 how serious cystic fibrosis was?
01:57 - Scared out of my mind for sure.
01:59 Your life expectancy at the time when you were diagnosed,
02:03 you said like 15 to 18.
02:05 It was like, what is this?
02:07 What are we gonna do now?
02:09 - Since I had gone nine years of my life untreated,
02:11 the doctors told my parents
02:13 that I probably wouldn't make it to 18.
02:15 I remember seeing him very upset.
02:18 As the years have gone on,
02:20 he's always told me that I broke his heart.
02:25 Sorry, I don't get it in motion.
02:27 - Once we started getting the treatments,
02:31 you responded pretty well to it.
02:32 So then they said that you would be
02:34 maybe into your young 20s.
02:36 - This past May, I turned 25
02:38 and I'm actually doing very well right now.
02:42 And I'm also on life-changing medicine
02:44 that should extend my life expectancy.
02:47 - It was crazy.
02:48 She was little and God said she went right into the hospital.
02:50 We didn't know if she was gonna come home.
02:52 - Over the years, my sister and I
02:53 have been frequent in the hospital.
02:56 We've both had times where we could barely breathe.
02:58 When she was younger,
02:59 she had some times where she was in there
03:01 for three, four weeks.
03:02 Between us, we've spent months in hospitals.
03:05 - We're told right from the beginning
03:06 that anybody with CF should not be anywhere near each other.
03:10 And they said that, you know, six foot apart
03:13 was like the absolute closest you could go.
03:16 - The risks of being around my sister,
03:18 it could be easier for us to pass lung infections
03:22 back and forth.
03:23 We could get each other sick.
03:24 - Every time they said that, or like you guys,
03:27 you and mom said, "Oh, you guys shouldn't be that close.
03:31 You shouldn't drink out of this.
03:32 You shouldn't be all touchy-touchy."
03:34 I'm like, it's kind of difficult
03:35 because I'm like best friends with my sister.
03:38 - If I'm near you all the time,
03:40 like I'm scared that we can pick up lung infections.
03:42 It sucks because those lung infections can be fatal.
03:46 - We try to avoid each other when we're sick,
03:49 but it's really hard because my sister is my best friend
03:52 and I want to be around her.
03:56 When I don't feel good and I like go a few weeks
03:58 without seeing you, I hate it.
03:59 Obviously I want to be around you,
04:01 but I would hate to know that I got you sick or hurt you.
04:06 - But now you're both doing great.
04:08 So that's awesome.
04:09 You and you guys are both healthy.
04:11 Then we can hang out.
04:12 - I've posted on TikTok over the years
04:15 about my cystic fibrosis, but it was very sporadic.
04:18 Recently, I posted a video talking about
04:20 how social media is a highlight reel
04:22 and you never actually know what somebody's going through.
04:25 You never know what people have to go through
04:27 on a daily basis.
04:28 It hit almost a million views.
04:30 I then started posting more about cystic fibrosis
04:33 and building a larger community on social media.
04:37 Do you want to make a TikTok?
04:39 - We're in our vests.
04:40 - Yeah.
04:40 Me and my sister have cystic fibrosis
04:44 and we have to do this two times a day for 15 minutes.
04:47 It has a big battery pack in the back.
04:49 It looks like you're a ninja turtle
04:51 and it helps you breathe better.
04:54 So, keeps us alive.
04:56 When we post TikToks, there's a lot of negative
05:00 and positive comments that we get,
05:03 but many of them are negative.
05:05 This girl said that we should clear our throat.
05:08 I sound like a smoker.
05:10 This one asked why I am constantly catching my breath
05:13 in my videos.
05:15 When I see people trolling my sister like that,
05:17 it hurts because I know how she wants
05:20 to make other people happy
05:22 and other people that have the disease seen.
05:25 She wants to make sure they're noticed.
05:28 She doesn't deserve that.
05:29 There's also many people that contact her
05:32 and say thank you for spreading awareness
05:35 because it really helps other people.
05:37 And I've had a lot of moms reach out to me
05:41 that they just found out their newborn has CF.
05:45 The more awareness that is spread,
05:46 the more money that can be raised
05:48 to help find a cure for cystic fibrosis
05:51 and improve not only my quality of life,
05:54 but my sister's and everybody else that has cystic fibrosis.
05:57 Hi, babe.
06:01 Hi, my love.
06:02 Dating with cystic fibrosis can be a bit difficult.
06:08 When I started dating my current boyfriend, Aaron,
06:11 we were three months into our relationship
06:13 and I had to be hospitalized.
06:15 It really scared me because I didn't know where,
06:19 how to react from it and what to do from that.
06:23 It made like this CF thing can like come out of nowhere
06:26 to affect you guys.
06:28 I feel like you handled it well, though.
06:30 I have always been protective over my sister,
06:33 but when they started dating,
06:34 she used to text me every single day
06:36 and was like, "Oh my God, like this guy is such a sweetheart.
06:40 "She can do her treatments in front of him
06:42 "and not feel uncomfortable."
06:44 I was like, "He's definitely the one for her."
06:46 I approve.
06:47 My hopes for my sister and I's future
06:51 would be to be successful, happy, and healthy.
06:56 I think that we are capable of being able to live
07:00 a long and healthy life,
07:01 as long as we take all of our medications
07:03 and keep up with our health.
07:06 Feel like Georgia and Alexis,
07:08 they deal with their condition pretty well.
07:10 I don't know how other people take it,
07:12 but they seem like they kill it pretty much
07:15 on a daily basis.
07:16 They're both really good fighters.
07:19 They're tough.
07:20 They're both really, really pretty amazing kids.
07:24 I couldn't imagine what life would be like
07:26 if I actually did stay six feet apart
07:28 from my sister at all times.
07:30 We love to do everything together.
07:32 Sharing a condition has brought us very close.
07:35 Really, if anything's going on in our life,
07:37 even besides cystic fibrosis,
07:39 it's easier to understand where we're coming from
07:41 because we do have that in common,
07:43 and it's a big life-changing thing to have in common.
07:46 It's nice having a best and best friend.
07:49 Love you.
07:52 I love you.
07:53 (upbeat music)
07:57 (silence)
07:59 [BLANK_AUDIO]