00:00My fused hands will not stop me from becoming a world-class make-up artist.
00:05My rare skin condition affects over 80% of my body.
00:09Currently, there's no cure and it is a progressive condition.
00:13Over time, my fingers and digits have fused together and that has made me have to adapt.
00:19My achievements have definitely boosted my self-confidence.
00:22Realising that if you have this disability, but you have defied the odds in many ways.
00:27My day in this has been amazing.
00:29What do you think of Chloe's new look?
00:35So, these are my pain medications.
00:38I usually take these three or four times a day on top of a pain patch that I wear seven days a week.
00:44Epidermolysis bullosa is a rare genetic skin condition.
00:48My body cannot create collagen, which is basically the glue that holds my layers of skin together.
00:56So, I'm extremely fragile and delicate and I can have wounds up to 80% of my body.
01:03So, the nurses that are here right now, one of them comes twice a week, the other comes three times a week.
01:10I have nurses and I have medical staff that come in and do a dressing change.
01:14Taking all the old bandages off and redressing all the wounds, which probably is the longest part of the whole process.
01:21On Monday, Wednesday, Friday, it takes four hours and Tuesday, Thursday, Saturday, Sunday, it takes an hour.
01:30Why is it so important to be changed so frequently?
01:32I'm extremely open to infections like sepsis. I'm prone to skin cancer.
01:38So, if I don't look after my skin, my skin won't look after me.
01:42Currently, there's no cure for AB and it is a progressive condition.
01:46So, I will get worse over time and I've already seen the side effects of that.
01:51My wounds are a lot worse than they used to be.
01:54My hands have fused together. I have a total of four whole fingers left.
01:59I've lost all my toes. They have completely fused together.
02:03So, about four years ago, I stopped fully walking.
02:06I could be a lot worse, but I could be a lot better.
02:10Hello.
02:11Hello.
02:12How are you?
02:13Good. Do you want tea?
02:14Yes, please.
02:17This scrapbook is dedicated to my beautiful little girl, Claudia.
02:20It's a collection of all our happy memories of your mum.
02:25I look spaced out now.
02:29You could see the tongue was swollen.
02:31Yeah. Yeah, yeah, yeah.
02:33But you were always happy.
02:34Yeah.
02:35Always smiling.
02:37That's the day we were taking you home and we had got the diagnosis,
02:42the full diagnosis, the same day.
02:44When we were given the diagnosis, we were shocked.
02:48AB can't be detected in the womb, so it only unfolded.
02:52When Claudia was born, that was our first experience of travelling with you.
02:57It was hard.
02:58So, your dad is in the pool with you there and you're swimming with all your bandages on
03:03and I stood at the bank and Dad put you up like that
03:06and then I wrapped you in a towel and I had to run from there through the foyer, the hotel,
03:10up into the room and then start your bandages then.
03:14It was hard for my parents. I know that. They really struggled.
03:18They're doing this for the first time, they don't know what they're doing.
03:21So they were doing what they could on instinct.
03:25It's like being in a different world where you've no answers
03:29and nobody really gave you the answers at the start.
03:33And you only found out how hard it was going to be as it was happening.
03:38From the day that Claudia was born, our lives changed forever.
03:43I dissociate from these pictures because it doesn't feel like me.
03:47Like, I look at that baby and it doesn't look like me.
03:51With the brown hair and the good skin, it looks like a different child.
03:55I've always struggled with my looks, especially as I've gotten older.
04:00The expectations of a girl are so high
04:05and the standards you have to live up to.
04:08My condition goes against all of those things.
04:11For most of the time in secondary school, I was ignored, I was shunned, completely looked over.
04:17I've always struggled with friendships.
04:19Doesn't mean I don't have friends anymore.
04:24You can't fix it as a parent. You can't make friends for your child.
04:29We watched her for six years suffer.
04:32The loneliness, the isolation.
04:35I'm the only person that understands myself
04:38and sometimes I couldn't explain to my parents.
04:42They can't say, I know how you feel or I wish I could take it away from you
04:47when you know that's never going to happen.
04:50So there's no point in even saying that to someone.
04:53But also, they have been always there for me
04:57and I know I can go to them.
04:59So I'm very lucky to have the support system that I do
05:02and I think that's how I got through most of it.
05:05I think it made her stronger.
05:07I admire that she's sitting here today.
05:09It's like she has been to hell and back
05:12and is still here, still fighting, physically and mentally.
05:18When I was becoming a pre-teen teenager,
05:21I was the generation that watched a lot of Emiways on YouTube.
05:27So I'm going to start with primer.
05:30I think that kind of turned on a little spark for me.
05:34I love to create something like that.
05:36It was something I could set my mind on
05:38and have a goal to reach towards,
05:41which is what I've done.
05:45So I started content creation when I was about 13
05:49because people had seen me for Debra Island many times,
05:54my charity.
05:55I had been on TV a few times
05:57or in a newspaper article.
05:59I think once they saw that I was on my own social media,
06:03people liked to see that side of things of me,
06:06not just from a campaigning point of view.
06:08I've had lovely messages of people saying that
06:12I've helped them and other people with my condition
06:15have reached out and said that
06:17I really look up to you and it's lovely to hear.
06:21So I'm doing a full natural dram look.
06:26This is the look that makes me feel most pretty.
06:29Once I was getting into my last few months of school,
06:32I kind of said to my mum and dad,
06:34I think there's this course I'd like to attend.
06:37College was just teaching me the professions as a model
06:41and how you can become good in the industries.
06:46I finished about a year ago
06:48and hope to be working very, very soon.
06:54What do you think of Claudia's new look?
06:56I love it.
06:58She's very talented.
06:59To watch her doing it, it's actually amazing to watch.
07:04It's like a pure artist at work.
07:06So I think she has the eye and the talent
07:09to go as far as she wants.
07:14I have many dreams and aspirations.
07:18I hope to maybe do fashion someday.
07:21I'd like to work with brands,
07:23maybe make my own makeup line one day.
07:26But you know what, I'm just happy to be here right now
07:30and whatever tomorrow brings, it brings.
07:33You'd have to live with Claudia and experience her life
07:36to be aware of the challenges that have been put in her way
07:39and she has overcome every single one.
07:43She put her head down because it's what she wanted to do.
07:47She passed her grades, went to college.
07:49The future is on its way.
07:51My achievements have definitely boosted my self-confidence.
07:55Realising that, hey, you can do great things
07:58no matter what the circumstances are.
08:01You have this disability, but you have to fight the odds in many ways.
08:07Will you be doing your daddy's makeup anytime soon?
08:09I have suggested that.
08:10She promised.
08:11I did suggest.
08:12She still hasn't done it yet.
08:13I want false eyelashes on, yeah.
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