My name's Sarah Morrell. I live in Whanganui. I live at home with my parents, Lynda and Ben Morrell, and my brother, Tim. My condition is called Morquio IV A. It's quite a rare genetic disorder. That's why I'm small stature and I'm unable to walk any more. But this is me, and I just do what I love doing and get on with it. Captions by James Brown. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 (GENTLE GUITAR MUSIC) So, I'm at the Whanganui Hospital. I come here once a week to get my IV infusion Vimizim. The process takes around five to six hours, just depending on what's happening. - Hi. How's it going? - Hey. Yeah, it's going good. - Oh, yay. Thank you. - Hot chocolate. - How's the infusion going? - Yeah, it's going all right. My condition is called Morquio IV A ` mucopolysaccharidosis. That's 21 letters, so it's quite long. There's about four or five of us in New Zealand. I'm missing an enzyme called GALNS that normally eats up all the bad toxins that build up around your body. Do you remember me much before I had Vimizim ` what I was like? - Let me wreck my brains a bit, because it's been a while, hasn't it, Sarah? This is, like.... It was about 10 years ago you started Vimizim. - Yeah, I think it was 2013. - 2013, so it'd be 10 years. - Yeah. - Wow, your 10th anniversary. - Oh my goodness! - I've never thought about it like that before. - No. - Wow, that's come around fast. (PEACEFUL GUITAR MUSIC) - I think the challenges my parents faced was that, cos... you know, it's a big deal finding out all your child is gonna have difficulties. It ain't going to be easy. - Yeah, I had a normal pregnancy. And, you know, I'm not one of those people that was nauseous or sick. It was just a happy time. Sarah was about 9 months. She started having a little sticky-out chest ` pigeon chest, it's called. The GP referred me to an orthopaedic surgeon. He said, 'I think I know what this is, but I need to do some tests.' It took about six months, and he said, Sarah has got this rare disease called mucopolysaccharidosis ` Morquio IV A. So we said, 'Well, what does that mean?' And he said, 'There's no treatment and there's no cure.' (TIM LAUGHS) Hello, Sarah! - BEN: There was grieving, because here's your beautiful little daughter, Sarah, and she's got something wrong with her. And back at that stage, telling us that there's no cure or no treatment, that was a bit of a shock. - Hi, Sarah. - So we didn't know where we were going. - And what it would mean for Sarah. - When I was diagnosed, my paediatrician told my parents, 'Focus on what you have and not what you don't.' - # Happy birthday, dear Sarah. # Happy birthday to you. - That's kind of been the family motto, and that's how I've always lived my life. - Sarah was growing normally till she was about 4, and then it started to show. Her joints were weak. Her elbows started getting knobbly. Her knees became knock-kneed. Because I was a nurse, I didn't want any surgery for Sarah before she was 5, so that she was untraumatised. For me, that was my gift to her. Mum, coming from a nursing background, understood the trauma it can be for a child. And so she sheltered me for that for at least the first five years of my life. When I was 5, I had my spinal fusion. I was about 8 or 7, I had my knees done. Then when I was about 12, they put rods down my back to keep it straight, because it was, like, an S shape. About six years ago now, they finished off the spinal fusion and fused my neck to my spine, my back. So that's why I can't turn my head. Every time I've had surgery, I've had to find a new normal. It's annoying, but I've got no choice. - She was finding it more and more difficult to walk. - She needed a wheelchair, and that was a whole different way of life. - Here she is, all ready to go. She was actually 6 or 7 before we got her into an electric wheelchair. - I tried one out, and I fell in love with it. I guess that's kind of the part of the family that was into cars, so that rubbed off. But I do love going fast. And my friends are always telling me off. 'Slow down! Slow down! You're going too fast.' It's like, well, just hurry up! (GIGGLES) Vimizim has changed my life. I've got way more energy. I've got pretty much no pain, which is incredible. Vimizim is an enzyme replacement therapy. The process takes around five to six hours. Every half an hour to an hour, they take my vital signs and slowly increase the drip. - My vitals all right? - Yeah, they're all stable, all good. - Oh, that's good. - Not misbehaving at all. - No. - Well done. I want you to ring me if you need me. Yes, I will. Yeah. Thank you so much, Linda. - I'll just take my piece of paper with me. - Yep. So it's my worst day. See you later. Normally, the day before, I'm quite tired, and I can get quite tired during the process. But then the next day, I'm back to my full self. When I was 13, Mum heard about this study in America, learning more about my condition, to see how it progressed over time. And so for five years, I did a yearly trip to San Francisco for a week. On my fifth trip, they said, 'Look, we've got this drug trial. Would you like to be a part of it?' And, you know, we kinda went, 'Huh?' You know, stopped and took our breath ` well, tried to take our breath, and... you know, and that was like, 'OK.' Dad and I decided that we would do it together. - It was originally gonna be a 12-month trial, and then it crept out for another six months, so we were away a year and a half. - Dad and I would tour around California, when we weren't in the hospital, and we turned it into a real adventure. So that was the big changing point. You know, I was able to adjust myself in the wheelchair, and I was able to hold a cup up to drink, and, you know, eat more food and that kind of thing ` was better at using a fork. - But they thought that New Zealand wouldn't have the facilities. - Yeah, one of the alternatives, for me to get the drug, was to fly to Sydney once a week. I mean, who knows how that would have gone? I mean, yeah, it'd be nice first time, but I think after a while it would have gotten a bit tedious. But the BioMarin pharmaceutical company came out to New Zealand. - And they came to Whanganui, just to see what the facilities were, and they said, 'They're perfect.' - So I'm very lucky that I can just go for a 10-minute drive, instead of having to fly to Australia once a week. It's hard to imagine my life before, because it's changed everything about it. I wake up at 7, when my support workers come. And they shower me and get me ready for the day. (VENTILATOR HUMS QUIETLY) - So, we're just trying to do it up to two seconds, so that we pump up all the base of your lung with lovely air. And then once we've opened up all those airways, we do a pump up and then a push out, and we try and suck out some of that... any gunk that might be down there, which there isn't usually. - There's a lot of things that she has to manage in her life. The last seven years have been sensational. The cough assistant and her CPAP have just made a huge difference. And Vimizim has made her life. - There. - All right. - Hug. Mwah! Love you, babe. (CHUCKLES) - See you later, Dad. - Have a good day. See you, sweetie. - OK, see you, Dad. Love you. Bye. - Bye. - Hey, Chantelle. And then my other carer, Chantelle, takes me to work. My work ID. I remembered it this morning, so that's good. I work five hours. Independence is a big, important aspect of my life. Let's go to work. I make sure that I can do things as much as I can for myself. A few years ago, I found out VW have their mobility van. I saw it, and I was like, 'I need that.' It means I can just drive into the back, get strapped down, and then I can travel without having to be lifted out of my wheelchair. - If it rains, give me a text, so that I can come pick you up. - Yeah, sounds good. - All right. - All right, then. - See you later. - See you later. So, I'm able to work part-time, which is pretty awesome. Vimizim has changed my life. Without Vimizim, I wouldn't be working. I don't know many other people similar to me that are working. I'm the disability support coordinator for the Whanganui Hospital. So I get to help the disabled community, my community, get vaccinated. So, yeah, so... I'll send you through an email, and we'll talk again soon. OK, bye. Julie, an organisation's got in touch with me, and they're interested about the new COVID booster, cos they employ disabled staff. And so I suggested that maybe you and your team could go down to them. - Yep. - And then we can arrange a date and a time and go from there. - Yep, perfect. - I organise outside clinics at their certain places, like either their homes or in a comfortable area. I help write up reports about the disabled community. But I've been able to learn more about different disabilities. This job has definitely transformed the way I've lived my life. It gives me something to look forward to during the day. Gets me out of bed. How's everything going here? - It's going really well, yeah. Kendra tells me you've just sent through some more info. - Yeah, yeah, I... I updated the report checklist. She notices things that we perhaps don't notice. And her knowledge and her enthusiasm for her role ` I mean, I think she did a business diploma ` just constantly pushing herself to do all that she can. And how was it coming in, with that foam piece? - Yeah, it makes it a lot better. - That's good. Less bumps are better, definitely. All right. - Well, I'll see you guys later. - OK. Thanks, Sarah. - OK. Bye. - See you later. Through this job as disability coordinator, I've discovered that I want to make everything accessible for all, no matter what your circumstances are. If you can make it accessible for one person, you can make it easier for everyone else. Can you please get me a drink? My carer Chantelle comes in the mornings and throughout the day and looks after me while Mum and Dad can go off and live their life. I don't wanna, you know, have my parents hovering over my shoulder all the time. I wanna do my own thing. - I think having Sarah as, like, a best friend, like, throughout my entire life from birth, has been so beneficial to understand ` like, us both understand disability and get through life together with that. I'm legally blind. I have achromatopsia. - Oh my goodness, those photos look incredible. - I know. - We had such an amazing day. I was so honoured to be your maid of honour. - It was an honour for me as well. - So, we've been friends since... - Since I was born, pretty much. - Yeah. - I would walk to you, or you would walk to me. - Then we'd go to school together. - Yeah, walk to school. - Jump on the back of your wheelchair, so I didn't have to walk. - Exactly. Exactly. - It was great. Perfect. You know, any opportunity. - She's my best friend. She's like a sister to me. And she's the one person in my life that totally gets it. Like, we both have a disability, and we both get it. Sarah is very mischievous. She's got a little wicked stripe to her, like she's... she's got wicked jokes, wicked sense of humour. I love it. She makes me laugh all the time. - (SIGHS) I can't believe you're married. - I know. It's crazy. - I don't... You just... Oh... - The third sister... - The third sister, yeah. - ...to get married. - Yep. One more to go. - And then you, babe. - Yep. - I just gotta find the right guy. - Yeah. He'll come along. - Yeah, I'm sure I will. I'll find him. This is the living room. We've only just recently painted it green. Mum and Dad have done that. Dad's always wanted a dark green room. And so this is pretty much our at-home movie theatre. My grandmother, she was a sculptress. Grandma definitely taught me a way to communicate and speak out when you're not... when you want something to change. This is a painting I did when I was at intermediate. It took me a year to do. Based on the artist Hundertwasser. And so, the thing about him is he doesn't like straight lines, and he loves weird colours. And that pretty much spoke to me, cos I'm hopeless at drawing straight lines. This is my room. Everything I need is at one level. And so nothing's too deep. And I can reach everything. My organised chaos. My hobbies is definitely to do with stationery. I'm obsessed with it, and I love stickers. I've actually got a silhouette cutting machine which I print and cut my own stickers. It's the arty side of my family coming through me. When I was, like, little, I actually wrote a poem, and my dad keeps the original in his wallet. And it's, I am me. I am free. I am a girl who wants to try as hard as she can to reach the top of the world. Thanks, Dad. - Now, what I'm thinking ` - because we had to cut out the old lemon tree that died,... - Yeah. ...that we extend the deck a little bit where it was,... - Yeah. - ...so that you can be nearer the people sitting around the barbecue right there, without having to drive around and down the ramp. - What do you reckon? - Oh, perfect. Yeah, that'll be good. My parents and my family have always involved me in everything they do. - I think it'll look really good. - Yeah. - Perfect. - Yeah. - Cool. - Let's go for it, eh? - Yeah. Let's do it right now. (BOTH LAUGH) (SEWING MACHINE WHIRRS) - All right. - This isn't my style. I wanna do something different, go in a different direction. But, you know, that's the thing with living at home ` she still gets her opinion, and I still need her help. - I think I respect your opinions. - Oh, you do, sometimes. - I do. It's just that I don't respect your taste. Sometimes your taste isn't as great as it should be. - Apparently I take after my father when it comes to style. (LAUGHS) - Ben can do formal really casually, and we love that about him. - So, um, Sara's exactly the same. - Yeah. - No fuss, thank you very much. - It can be difficult to find the right size clothing. But one of the things I've found is my mum is a great sewer. - OK, let's see if it works. - So if the sleeves are too long or the dress length or the skirt was too long, they can shorten it and make it fit my body shape, cos it is a bit wonky in some places ` I'll admit it. I get frustrated at that ` like most women do, not having the perfect look ` but I just, you know, make it work. - Just come and have a look and see whether you think that's the right size. - I think it's gonna be a good choice to wear to work. - Yeah, and it goes with your eyes. - Especially now, with autumn and winter. - It looks really neat, Sarah. I think it looks awesome. - Thanks, Mum. (GENTLE MUSIC) You know, I want to do my own thing. So I try and be as independent as possible. My parents have definitely focused on my life and living it. - Sarah, she's just made me appreciate life and what you can make out of it, no matter what the odds are. Do what you can with what you've got. Go for it. - The most important thing that Sarah brings to me is joy. Joy in life, and joy in every little moment. - She's just given us... just joy and happiness. - I do have challenges, but I guess I've never really focused on them. Every day there's always something new, and I'm always discovering another way of doing things. And, yeah, I just go along for the ride. Captions by James Brown. Captions were made with the support of NZ On Air.