UPLIFTING MUSIC Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 UPLIFTING MUSIC SWELLS GENTLE GUITAR MUSIC Whee! My name's Maija, and my last name's Fredrichberg. And this school that I go to is Waiheke Primary, where I am now. Yeah, I just think I'm a normal 10-year-old girl in a wheelchair. I'm a girl with a big imagination, and I also like eating. I like playing on my computer. I like playing with my dog. I like doing all sorts of stuff. UPLIFTING MUSIC How are you going to do your illustration? Jemima? Do a border. Do a border. How... > I put my imagination to use by writing stories. Good work... > There you go. Thank you. You're welcome. Well, you plan your narrative, you plan all your characters, and also if you have a good imagination, I guess you could do anything with your stories. JAUNTY MUSIC My dad ` he's a good sort. He gives me love. He gives me a lot of things I want. He gives me everything and spins me on my toilet chair. And he chucks me on the bed, and sometimes we play flying dog. So we basically chuck Penny on to the bed. FRENCH-STYLE MUSIC My mum ` she's lovely. She likes reading, and she likes taking care of us. She sometimes doesn't agree with Dad. And sometimes she does like, 'No, no!' If I've had a bad day, I tell my parents what happened in that day, and then I just forget about it so quickly. And then I hope the next day I have a good day. Turn, turn, turn! I wish this nunchuk would work. I'm 10, and it's good to be double digits, because I'm nearly getting into teenage, just like my brother. My brother George ` he's... annoying, funny and really cool. < Gotta move around on it. Um, my condition is called SMA, also stands for spinal muscular atrophy. And it's a condition where, um, people can't walk, because it doesn't send a message to their brain for their legs to work. Up. And can you turn it? Once upon a time, a long time ago, my mum and dad had to decide whether to give me a back operation. It was the hardest decision my parents have ever made. What happened? What did they do on my back to get the back rods in? I was just wondering. They, um` They made a cut in the bottom of your back and a cut in the top of your back. And then they fed the rods up` up either side of your spine. OK. And they straightened your back up as much as they could, and then they attached the rods that go down to your hip, the back of your hips and pelvis, and up on your, um` up to your, sort of, shoulders and in the back of your neck here. They attached them. Mm-hm. And then they've got a bit in between that's what's called telescopic, so it can grow, and they usually grow them about 2mm or 3mm each three months. What does it feel like when they grow you? It kind of tickles. Kind of tickles? And it only takes about a minute each side, and you said it feels funny when they've done one side and not the other. I guess it was a hard decision to make to give` to have the surgery, but it's been the best thing we've done, isn't it? It's made you` your breathing better, and you haven't, um, been` had any pneumonias since. And you're straighter in your chair and more comfortable. GENTLE MUSIC LAUGHS: Oh! (CRIES) But she met all the milestones up until she was about 5 months old. (COOS) You gonna roll over? You know, you put your baby on their tummy and they're meant to do the pushing up sort of thing, and she just lay there with her head on the ground. You know, you bounce your baby on your legs and they push back, and she was just not pushing back. GENTLE MUSIC So we went and saw the doctor, and the doctor was checking reflexes and stuff and her knees and ankles, and they weren't going. And they came up with a provisional diagnosis of spinal muscular atrophy, so, I mean, my world crashed. POIGNANT MUSIC We were told maybe she wouldn't make it to 5, and then we were told that she would have respiratory issues. The first couple of years of her life, she was sick all time. She got pneumonia all the time, so we were in Starship all the time. She could have died three different ways in a week when she was 3 and a half, but she didn't, and she got through each one of them. < Whee! (LAUGHS) LAUGHTER I think it was like a shock for them to find out that I couldn't walk. Hiiii. But I reckon it` it will be all right because, you know, I'm continuing in my everyday life, and it's been going OK. Yep. (SIGHS) OK. As she's got older, her muscles are getting weaker and her spine's begun to curve further and further over and her organs have become cramped, and that was threatening her life. Because of my condition, my spine, it got curved, and the doctor said it would be bad to leave it curved. Oh, yeah. It was making me all crooked, lopsided, and I couldn't sit up straight. Yeah, it was putting pressure on my organs by being lopsided. And the curvature in her spine was... progressing pretty rapidly. It was a choice of living with the scoliosis and the complications that came along with that or do surgery, and we were always told that that wasn't possible, that the risks were too big. We made a decision pretty quickly to` to say, 'No, we're not gonna risk it.' OK, you need to get off the tramp. It's all right. And it was a few months later, Jessie went to another appointment with her doctor that's known her since her diagnosis, and she took one look at her and said, 'I think you could really have a go at this and probably come away with a result.' Yep. Jessie had changed our mind, and to me it just put` put your mind in a void about what's gonna happen. Not a big one! You better make sure he doesn't... If she had spinal rodding and she was still growing,... Superman! ...she would have had to have surgery every six months to extend the rods, but now they can do it non-surgically with electromagnets. Yeah! Whoa. (LAUGHS) (GIGGLES) I don't want her to have an unhappy, painful life. I want her to have a good life, so it came to the stage where it was worth the risk for her quality of life. We had counselling so that` I didn't want, if something did happen, for it to fall back on me that it was my fault, that I made the decision solely and that` that, you know, I would hate it if Fred said to me, 'Well, it's your fault that she died, because you pushed having the surgery.' We both had to be comfortable and on the same page. So, yes, it was the toughest decision of our lives. It's absolutely the toughest decision. It's tearing me right in the tummy right now. Yeah. Maija, you know you're not allowed to drive around while you're eating. Can you come and park over here? And keep still, please. (SIGHS) Round there. OK, I'm gonna turn you off. This way. One of the things that can happen when you straighten someone up when their body is used to being curved is that` that she can lose the ability to swallow, because suddenly her oesophagus, or food pipe, has been straightened, and where it's used to being` going down like this, it's suddenly dropping through. And things like she has to relearn to swallow. The worst-case scenario ` it could be a six-month hospital stay. TV PLAYS QUIETLY IN BACKGROUND Is this new pyjama bottoms? I don't know. They look like it. I haven't seen them before. (SQUEALS) For night-time, I need my VPAP, which is a mask that helps me breathe and gets enough air into my lungs. Before we go to bed, we probably turn her two or three times. Usually it's three times turning before she goes to sleep, um, and then about three times before we go to bed. And then, um, a good night's about four times up, and, um, an average is about six times, and, um, a bad night's about eight. Last night it was clogging up with water, but` Was it? Maybe the humidifier's up too high. We don't set the alarm or anything, um, and I think she just` you know, just like most people, you get uncomfortable lying on the same side. Um, and why do you need to`? Why do you call out in the night, Maija? Because I get hot. Yep, and what else? VPAP WHIRRS Can't get to sleep. Mm. Thirsty? Mm-hm. Wanna be turned over? Yeah. AIR WHOOSHES GENTLE LILTING MUSIC I have very interesting, weird dreams. Sometimes I can walk in those dreams. MUSIC CONTINUES When I wake up, I think it's more realistic. GENTLE LILTING MUSIC FADES JAUNTY PIANO MUSIC MUSIC QUICKENS Anaesthetics are a big risk for children with SMA. Because she's got such weak muscles, she tummy breathes, so we're back into Starship so they can check on her breathing. It makes a big splash. (SPEAKS INDISTINCTLY) And this one is` Are you getting splashed? I'm getting splashed? (SQUEALS) Oi! It's healthy, anyway. (GRUMBLES) All right. Now, love, you can have a little bit longer out here, but it's really windy and really cold. No, I'm fine. I wanna` Oh, it splashed me again. I wanna play around, though. JAUNTY PIANO MUSIC MUSIC FADES PEOPLE CHATTER Tonight, before she goes to sleep, they put a camera on her, and the ones on her head measure her different levels of sleep. And, um, the ones on her chest measure her... breathing and her heart rate. Breathing with this machine pushes air into her lungs, making her take a bigger breath. In... and out. (GROANS) Two more. In... and out. (GROANS) Good girl. She'd had a period of being quite well respiratorily, and` and that window was important as well, and they'd done another sleep study, and they'd` they'd done a whole lot of, sort of, tests to make sure she was in the best possible health. Yeah, I couldn't believe she actually cracked a hospital admission pneumonia in the couple of months before the operation that` when it finally happened. (LAUGHS SOFTLY) Well done, honey. BOTH SIGH I've been so patient. You have been very good. OK? Mm-hm. Mm-hm. GENTLE GUITAR MUSIC MUSIC CONTINUES 1 Back over here. Over here. Oh. Yep, sitting with her back against the board for us if that's all right? OK, just keep your hands out to the side. Yep, should be all good. All right, very still for us. GENTLE GUITAR MUSIC Gidday. How are you? Hi. Good to see you. Hey, Maija. Maija. Hi. How are you? Good. All right? Remember me? Mm-hm. OK. How are you guys? OK. Good. And you've had an X-ray today, you tell me. Shall we have a look at that? Mm-hm. And this is the front-on one today. So, we've talked about the back surgery with Maija and about the fact that if she has some rods in her back, that will help her be straight. Yep. And I know Maija says that she's sick of flopping. It's getting harder and harder to keep her straight with lateral support and seating and stuff, and certainly when you, for instance, put her on the toilet chair, she's right over. Yep. I have a question. I think it would kind of make me fall over. The whole idea, love, of making your back straight is so you sit up better in your chair. Mm-hm. So you don't have to rest on your arm like you're doing now. You won't topple over when you're on the toilet. It'll just help you be` sit up straighter, and then that'll take some pressure off your tummy and your lungs, and it will actually help you breathe a bit better as well. Well, it` then I won't be able to do trampoline again. Sure, you'll be able to do trampoline. Yeah, cos that was one thing we do ask, cos she enjoys a bit of a... a bounce. You'll be able to do all the things that you used to do. Hey, team. > PEOPLE MURMUR So I wanted, um,... (CLEARS THROAT) Maija not to be in the room while we talk about the, uh, surgery and what that entails and things. The big dilemma for you guys is with patients like her and other patients which have neurological problems and breathing issues is how long you stay on a ventilator for afterwards, and I` And I have this discussion with all the parents with children like Maija. Yes, she has a chance of dying in this perioperative period for this operation. Most parents then want to know what's the percentage chance of that, and, uh, I think that's a really realistic question to ask. There is no percentage you can give for someone like Maija. I think you've just got to be confident that she will do fine. > I think you have to accept, though, in your own mind that there is a possibility of her not surviving. > All right. No questions? (MURMURS) All right, it's a lot to assimilate, but, uh, have a think, give us a call, and, uh... OK, so we just call Tina? Yeah. OK. Good. Thanks. You'll be fine. See ya. See ya. Thank you. POIGNANT PIANO MUSIC MUSIC CONTINUES It's a little bit of a worry to think that we've got to do it sooner rather than later, and sooner is gonna have us plotted right in the middle of winter. POIGNANT MUSIC MUSIC CONTINUES I think it's best for her, but, um, you know, it's` it's scary. POIGNANT MUSIC And I think it's hard because no one will say, 'Yes, you have to do it.' It's up to us, and that just` it's` it's so hard. Mm. I think it was harder for my parents than me. I realised they were so sad when, you know, they got warned that there could be a risk of me, you know, not living or living. POIGNANT MUSIC JAUNTY MUSIC PLAYS SOFTLY ON TV I mean, people say, 'Oh, I don't know how you do it.' Well, you don't have a choice. You just do it. You have to. And, I mean, Maija just had a cry before because she wanted me to` all the other mummies go and pick up their kids from school, and I don't. It's caregivers that pick Maija up. Um, but, you know, we've got a mortgage to pay and` and bills to pay, and we can't afford for one of us to be off work. A lot of friends say, 'Oh, you know, I don't do enough and stuff,' but, actually` and the same with Mum and stuff, but actually what you want is your mum and you want your friends. You don't actually want people to come and care for Maija. You want your life ` that little bit of normalcy to stay. I mean, your life completely changes with one` One appointment at a hospital, and your whole life changes irreplaceably from that day. And` And it's really important for me to have a girlfriend to come over and have a glass of wine every now and again and, you know, have a bitch about your husband and all those normal things. Those normal things are so precious. You hang on to them. TCHAIKOVSKY'S 'SWAN LAKE' PLAYS ON TV I think we're` we're leaning quite heavily towards doing the surgery. You know, not being able to make eye contact with people and` and looking really different for children is` is something that people won't approach her as much and stuff like that, so there's a sort of social side of` of why we wanna do it. Um, there's the obvious health benefits for her internal organs and stuff. We have to give this chance to Maija. I mean, it's... We can't not do it and just for our own reasons. We have to give her the best chance of... of a better life that we can give her or` or not and just, you know` just have her for as long as we can have her. Turn around and tell us what you think about having the spinal rods. Well, I think it would be great for me to be straight. And the spine rods ` I think I can cope with that, and I hope I get straight very soon. Very very soon. GENTLE GUITAR MUSIC We actually got scheduled in to have the operation. A couple of weeks ago. We got a phone call saying, 'Right, it's gonna happen next Tuesday,' from the surgeon. (GASPS) All right. And that's when Make-A-Wish found out what was happening and came and gave Maija a Make-A-Wish weekend, which they wanted to do something for some time anyway. Maija, here's your itinerary. You might wanna see what we've got scheduled for you. Ice skating, Maija. Paradice Ice Skating. Cool! Kelly Tarlton's. Oh, what's this? Hmm. See what's in here. Ohhh. (SQUEALS) A Prezzy card! (GASPS) It's almost like a frantic, 'have to make it amazing' sort of, 'this could be the last time we do this as a family,' and we need to create some really good memories and we need to take lots of photos and all of that sort of stuff, cos that could have been, you know, that last family weekend together, yeah. Um, so you're aware of that the whole time. I love the swimming pool. GENTLE PIANO MUSIC Whoop! Oh! Whee! Hey, oh. No, no, no. Not this way. It's OK. (GRUNTS) GENTLE MUSIC CONTINUES I remember going to my favourite hotel, the Heritage, in Auckland and having fun in the pool, you know, just having fun and doing all my favourite things. GENTLE MUSIC BOTH LAUGH POIGNANT PIANO MUSIC PEOPLE CHATTER Right, so Tina's gonna kind of give you a big bear hug under the arms. Oh, like yesterday. One, two, three. And up you go. One, two, three. Are you tall? Is it tickling you? No, it's fine. And what we're looking for there, Mum` Oh, do you want to go back up again one more time? So you can see the` OK, so` ...big bend this way... One, two,... ...when she goes to lift her up. ...three. That comes up. (LAUGHS) Am I strong? Yeah. Quite straight, so that's good. OK, well done. And down. BOTH WHISPER Well, Maija, have you got any questions you wanna ask him? > In my back, it just keeps on curving me that way. Yep. > And on the swing, sometimes I get... like almost like... almost... like you're gonna fall out and crooked and` and my head gets so floppy. Mm-hm. Well, hopefully that's why you're gonna have the` the surgery. Well, the` the rods will help hold your back straight, > but it won't` it won't necessarily change the floppiness of your neck, cos the muscles go all the way up to hold your head. But at same time, if your shoulders aren't on an angle, it hopefully will make it easier for you to hold your head up, so that will be good, won't it? Eh? Yeah. > POIGNANT MUSIC I thought it was terrifying ` you know, the risk if I was gonna live or not live. MUSIC CONTINUES PEOPLE CHATTER MUSIC SWELLS Hey, there's lots of people. POIGNANT MUSIC Along there, and then it's` Like that? You can see one coming down if you like. OK. POIGNANT MUSIC PEOPLE CHATTER MUSIC SWELLS MUSIC FADES INQUISITIVE MUSIC She woke up probably about an hour after we were allowed into the recovery to see her. They'd taken her off the ventilator in theatre and just put her on to her VPAP. We had one night in intensive care instead of many nights, which we expected. She wanted to get out of bed after a couple of days. Got her out of bed and put her in a` in her powerchair. Then the first thing that they noticed was, you know, her head was this much taller than her headrest, cos that's how much she'd grown just from the rods being put in and the spine being straight. INQUISITIVE MUSIC Look at how straight you are. Yeah. Does it feel amazing, sitting up like that? Uh, yeah. Yeah? Uh... Does it feel different to how you used to sit? Mm-hm. Just like one bit. I thought, 'Oh, wow. They gave me a surgery. Is this gonna change my life?' And it did. I can lean forward in my chair. And now when I'm swimming, I can hold on to the bars, because of my back operation, without my dad holding me. It's a big risk, but I took it, and it all turned out well. STRAUSS' 'THE BLUE DANUBE' OK, down now. Got it? Up. Holding on? Yep. 'THE BLUE DANUBE' CONTINUES Life is so much better for me with my surgery, and now I think it's just so much better than it used to be. Don't! (SQUEALS) Whee! Don't! (SQUEALS) Don't spin me! (SQUEALS) Whee! (LAUGHS) Dance? Yeah. (HUMS 'THE BLUE DANUBE') I have. Whoa! 'THE BLUE DANUBE' CONTINUES FRED: I still get my strength from her. She's come through so many things in her short life already. I'd love her to be able to be independent. I'd be overwhelmed if Maija could know exactly where she wants to go and make something of her life. In my life, my goal is to be a pop star. And if I don't reach that goal, my backup job could be, like, designing computer things for apps and stuff. Maija can look into the future as far as she wants, because she believes she can do anything, and that's` that's awesome. 'THE BLUE DANUBE' CONTINUES Whee! MUSIC QUICKENS All right? Yeah. (LAUGHS) OK? Yeah. 'THE BLUE DANUBE' CRESCENDOES, ENDS Nominations for the eighth annual Attitude Awards are now open. For information and entry forms... It's great to be in an audience where people are talking about ability and not disability. The Glasgow 2015 IPC Swimming World Championships take place July 13th to July 19th. Watch it live or on demand at... And remember, drink plenty so you stay hydrated and eat well so you've got plenty of energy. Captions were made possible with funding from NZ On Air. Copyright Able 2015