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I have seven machines that keep me alive. Without them, I wouldn't be able to breathe
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If the machine was to break at the wrong time, my life could be at risk
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When you're talking about supporting someone's breathing, that is key. Currently, I'm going through facility testing to see if I can have children in the future
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It's a huge conversation, but even strong, it's very strong. People online say I'm selfish and they say that I shouldn't have kids because of my condition
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Today I'm going to host a live TikTok to a label outfit to clap back at the haters
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Right, it's time to educate the trolls. Reggie, comment? Yeah. The day today I need help with most things, physically especially
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So getting out, getting dressed, crushing my teeth. This is Freya and she's one of my PAs
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She helps me do everything I need to do physically throughout the day to live my life basically
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Get up and out of bed, it can take anywhere from three to four hours
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It can get frustrated but I think I've been doing it so long that I just get so used to it
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I have Ulrich Bustina Dystrophy and that affects all my muscles, including my breathing
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so that's why I use a ventilator and also a wheelchair. Your PAs, they become like your family
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I know your deepest, darkest secrets. That's true, I know yours, I know yours
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I think this is the biggest trust. Yeah. The mascara. I mean, I have poked Eden in the eye a couple of times, but..
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Trust at all, sir. My tradition is a progressive tradition, but when I was a child, I was stronger
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and I could never walk, but I could sort of go around on my knees
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and then as I got older, I definitely got weaker. I am obsessed with shoes. I've probably got over 100 pairs, not even joking. And that's
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ironic because I can't even walk. Thank you. You alright You got any plans today Yeah you do Check the dogs take the dogs Growing up in my condition I never actually saw myself with a disability
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As a child, nothing was going to stop me. If I wanted to do something, I would find a way to do it
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And my parents, they never said, no, Eden, you can't do that
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So one of the important things for Eden is it's her window to the world, it's her phone
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So that's why we came up with this bracket. So if Eden needed to make an emergency call or whatever, you've got it all there on your phone, haven't you
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And more importantly, if she wants to take texts from one of her mates, that's more important than Eden
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So you've got your wheelchair there, you've got your ventilator on the back of the wheelchair
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I can't breathe by myself anymore. So I use this ventilator, which has been a lifeline for me
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Next to her bed, Eden has a ventilator that she has overnight and a humidifier
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This just makes the air that she's breathing nice and moist. I have seven machines that help for my breathing and live my life
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I've got a SATS monitor, so that monitors my oxygen levels. and I've got suction machine which allows me to keep my airway clear
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This is Eden's travel suction machine that goes out wherever Eden goes
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even on a walk out of the house. I've got my cough assist which looks quite scary
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This actually instigates a cough reading because Eden doesn't have the power to cough deep
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So I can get really anxious thinking about how reliant I am on machines
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If a machine was to break at the wrong time, my life could be at risk
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Every piece of medical equipment Eden has, there is a backup for that, and in some cases there's a backup for the backup
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So it might seem a little bit over the top, but when you're talking about supporting someone's breathing, that is key
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I have to remind myself I got the backup I got my PAs they know what they doing if I need it they sort it out I going to do a live on TikTok today about my fertility and looking into being a parent in the future and see what they got to say about it
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Recently I've been speaking to doctors and doing some various tests about fertility
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and all around that because I'm 25 now and I just want to make an informed decision
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whether I want to decide to freeze my eggs, We don't know if it's at all possible physically
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and there are other means of having a baby. So it's a huge conversation and a huge journey
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but Eden's strong. She's very strong. Do you want your ring light
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Just please, yeah. I am nervous about the comments that I might get
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surrounding it because people are brutal on the internet especially when it does the parenting
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I've done a few videos on this subject before and the comments weren't all great
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Someone said, Reginald rules can't be choosers. So that was quite nice
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Someone else has said, if you can't look after yourself, how do you expect to care for a child
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That's child neglect. Well, it wouldn't be. I'd make sure that child has got the right there in place
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So I was like, you shouldn't bring someone else like you into the world
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You should never been born, all of that. I like to believe that's true liability
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because people don't understand what having a disability is. And actually you can have connections with people
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It's just in a different way. Right, it's time to educate the trolls
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Welcome in. Hi, hi. Oh, scrunched up. Someone's gone, Larry me. You're all right, thanks
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Do you think you'd have children? So the answer is, I don't know yet
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I need to find out if my disability needs to be passed on to a child Oh veggie comment Veggie Yeah With the dad comments there always a good comment I even had someone ask me to do my sorority It really important to me to keep putting the videos out there
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Ask me whatever you want and educate people in a nice way
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So there you guys, thanks for watching. I hope people took away from that, that, you know, I am just like everybody else
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Disability is the only minority group. that anyone could put on a card at any time in their life
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So saying that I can't look after a baby, well, that could happen to anyone at any point
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I always say I'm lucky to be born with my disability. I've actually been asked, if there was a cure, would you take it
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And I've actually said no, because that's not who I am. I am Eden with my disability and I am here I am because of that
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Oh yeah. Good afternoon. Hello. I am very, very proud of Eden in all that she does
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All our friends, the one thing they've always said to us is that she's an absolute inspiration
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because they do view her on TikTok, I believe, or whatever. But it's the truth
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She's our favourite granddaughter. She's the only one but she's our favourite granddaughter
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I'm extremely proud of Eiji. She is constantly surprising us but just a very positive, determined young lady
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I feel very, very tall when I walk out with her. I hope that people will take away from my story that disability isn't that different
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You have the same wants and needs. You just do it a different way
