- Maddie's my little Mini-Me. (LAUGHS) I need Maddie just as much as she needs me. Where there's Maddie, there's me; where there's me, there's Maddie. Maddison was born with Pfeiffer syndrome Type 2, with clover head. She's had every odd put against her. She was meant to be braindead, wasn't meant to be walking, she wasn't meant to be talking. So she's beat all those odds and some, but, yeah... She's` She's just one... amazing, amazing little girl. Captions by Kate McCullough. Edited by Tom Clarke. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 (GENTLE MUSIC) I was 41. My youngest child was 13. Maddison was born with Pfeiffer syndrome Type 2 and hypoplastic left heart syndrome. Maddie's the only one in New Zealand with it. She has other disabilities ` she has hearing loss, she has balance problems. Gonna go up here? She knows her own limits. If there's a ramp, yeah, she will go up a ramp. - One, two, three, four... five, six, seven, eight, nine, 10, 11, 12, 13, 14. - 14. Yay! - I know. - Are you gonna give it a go? - Give it a go. - Gonna give it a go? Yeah? - Have a go. - OK. Would you like some help? Do you want some help? - No. - Do you want Mummy to come up there and help you? Going to a playground for Maddie is not really that fun. It pulls on the heartstrings, yeah, to see Maddie unable to do what kids do. She won't go down a slide, but she'll sit on the top of the slide. What about Maddie go down? - No. - Yeah. You've got to follow your shoes. It's OK. In your time, eh. I often stand back and watch Maddie when she is at a playground. I try and jump into her mind to see what she is thinking, and every now and then, you'll capture her just standing there, watching other kids. And then she just, sort of, puts her head down and carries on with whatever she's doing. - Higher! - Higher. Watch out. Don't let me push you over! - (LAUGHS) - See, you wanna turn? - No. - It's fun. Whee! Maddie's smile ` cheeky. She's cheeky. It's her smile. She's got the most beautiful smile. Normal pregnancy up to my 20-week scan (SIGHS). That's when they picked up Maddie's heart condition, and they advised me to abort Maddie. It was a simple no. If I could bring this child into the world, and if she took her` took a breath and then decided to go, well, then that was her decision. I was not going to make that decision for her. I got induced at 38 weeks because of the heart condition. There were no signs of the Pfeiffer syndrome. When she was born, they put a hat on her, so I wasn't aware of her head at that point. All I was concerned about, you know, was the heart. They wheeled me down to see Maddie in PICU... and that was the first time... that I had seen her head. It threw me back for just a second, and then, yeah` and then she was still my beautiful girl. She got given two weeks because the syndrome was unknown, and because of the syndrome, they couldn't do her` the major first heart surgery, so, um... Pfeiffer syndrome is a condition that when the baby's in the womb, the bones in the skull fuse too early. With Pfeiffer comes the head shape, bulgy eyes. There's always a underbite. They need multiple surgeries to pull the back of the skull out so there's room for the brain to grow. Maddison has had, all up, eight surgeries. The screws were to... So it was to` Every time they were turned twice a day, the back of the skull would come out more. So that's what they were used for. So she's had two lots of those done. Well, as you can see here, she, uh` yeah, sassy little thing. Maddison just bounces back with every surgery. She just takes whatever comes. - Into my bags. - It's not often that I reflect back on the things that Maddie's been through, cos I'm` I always go forward; but when I do, I'm still blown away. Her fight to live is just mind-blowing. Never believed in miracles, previously to Maddie. She's a true miracle. (TOY RATTLES) - Oopsy. - We're off to see a wonderful guy from Auckland University. So, one of Maddie's things I really want her to do is to ride a bike, because it's just what kids do ` the enjoyment of it and exercise. The problems with the helmets is that there's only one mould for these helmets, and it's for people with round heads. Maddie has a very high head, so the depth of a helmet just does not fit her head. If I stuck a normal helmet on her, it would be done up here. - Hi, guys. - Hi. - Welcome to the Creative Design and Additive Manufacturing Lab. And who do we have here today? - This is Maddison. - Hi, Maddison. - Hi. - Oh, you're gonna shake my hand? Sweet. (LAUGHS) Nice. So with Maddie today, I've got our Artec Leo 3D scanner. It's a white-light scanner. A big bright light is going to come out of here, and I'm going to walk around Maddie and scan her head. So what's really, really cool about that is I'm going to get a 3D file, and that'll mean that I can map the dimensions and basically the shape of her head, which means we can then create custom things that fit her perfectly. Fantastic. All righty. Look how awesome the scan turned out. - Maddie doesn't know she's different. Yeah, not once has she ever looked in the mirror and even asked, you know, why does she look different? Why is her head shaped that way? But then I've always told her, you know, she's beautiful, and she's unique, and she's special ` and she says that every night before she goes to bed. (CHEERFUL MUSIC) Maddie. - Hmm? - Got anything exciting happening at school today? - Yeah. - What? - I don't know. - You don't know? Reading or writing... - Writing. - Writing? - Yeah. - Yeah? What are you gonna write about? - Saw baby Kamaia. - You saw baby Kamaia. I know. She's so little, isn't she? She's gorgeous, eh? 'Maddie's very independent. Nothing holds her back at all. 'Maddie never questions her ability not to do anything. 'Maddie just sees herself as a normal child.' Over time, she's gotten a lot better. I still, as you can see, stand right next to her (CHUCKLES) to make sure she brushes them properly. Because of her underbite, it's quite hard for her to get all her teeth. So I normally go in there and give it a good scrub afterwards. (LAUGHS) Here we go. - (CLEARS THROAT) - All right, young lady, ready for school. Shoes. - Where's my shoes? - In your wardrobe. 'Yeah, not much different from the other kids. 'Yeah. This is not my first rodeo, so it's... (CHUCKLES) 'not much difference from getting the other kids up and getting them ready for school.' Oh, beautiful. - I'm ready for school. - You're ready for school? OK. - You gonna be there? Are you? - WHISPERS: I love you. - WHISPERS: I love you. - All ready? - Yep. - Yep. - Yep, yep. - Maddie starting school was always a massive anxiety for me. Took me a while to find the right school for Maddie. Once I did, then that was it. I mean, the school that she's at is absolutely amazing. All right, give me a kiss. - Bye, Mama. - I love you. Have a great day, OK? Mummy will see you after school. OK? Yeah? - Bye, Mum. - Bye, my girl. She meets her little friend, who's always there in the morning just to wait for Maddie, and they toddle off together. - Come on. I'll walk you to ramp, walk you to ramp. - I'm going to say a big good morning, Room Five! - CHILDREN: Good morning, Miss Smith. - I am so excited because I see lots of us here today. Everyone looks amazing, by the way. Guten morgen, Jonty. - Guten morgen. - Guten morgen, Carly-May. - Guten morgen. - Guten morgen, Maddie. - Guten morgen, Miss Smith. - Good job, Mads. - It's very important for Maddie to go to school on... for many reasons ` the sociability, the learning, cos Maddie... Maddie wants to learn. She's a quick learner. And just being around other kids, you know, that accept her for how she is, Maddie doesn't see she's different from other kids ` and the kids at school all treat her normal. - Oh my goodness, we have the best singers in the school. E noho. So in the two years I've been teaching Maddie, Maddie has grown so much in her confidence, and we can really see that. She's really outgoing, and I think lots of kids are drawn to that, and Maddie has really pushed herself. So she works alongside Lara, and Lara helps her with her hearing, her speech, and she does lots of stuff around vocabulary as well. - She's definitely growing her vocabulary ` and that's something that we work on every time I come, really. - A zebra. - Yeah. - A zebra. - Yeah. What can you tell me about that zebra? - He... He eats piz... pizza. - He eats pizza?! - Yeah. - Since when did zebras eat pizza? So when we're looking at introducing these things, she's enjoying the game, but we're also looking at the different language that she might like to use in her story-writing, or she might come across in picture books or her readers. - I'd be lying if I said it didn't worry me when she started school, about the friendship side of things. There's a certain age where children just accept; they don't know at this age how to be cruel. She's made a lot of friends at school. I will keep her at that school, obviously, until she can't be there any more. After that, I'm not too sure yet... where I'll be sending her, because she'll be at that age where... bullying in school is quite high up here. Then again, I know Maddie's got the strength in her and the self-worth and the love she has for herself to, sort of, hopefully, not be bullied, or to stand up to the bullies. Bu, yeah, I'll attack that when` (CHUCKLES) when that comes. (RELAXED MUSIC) 'We're at the lab today to fit Maddison's helmet, which is a prototype helmet.' - Welcome back. - Been seven years searching for helmets and that for Maddison, and now we're here, and we're going to try a trike ` which I'm extremely excited about, because it's going to be the first time that I see her on a bike. - So I'm gonna show you some of the nerdy things that we've been up to. You remember this scanner, Maddie? - Yeah. - Awesome. So what we did is we took the scanner, right? That's the scan data here, and then what we did is we used this fancy, fancy nerdy software to take a scan of your head and create this green bit over here. It fits your head perfectly. - Yeah. - Cool. Excited to try it on? - Yeah. - Sweet. All righty. So let's bring it on over. So here is the helmet. You'll see it looks like a helmet, right, from the store. Open it up, and you'll notice... Ooh. Yep. Thank you. Look at that. - Look at the colour! - You see what colour it is? Shall we put it on? - Yeah. - Sweet. Here we go. On we go. Fantastic. - GIGGLES: Yay. - And we've got a little clip over this side. There we go. Fantastic. - What do you think of that? High-five. Yeah. Whoo-hoo! Pretty cool. - Yeah. - Yeah? - Yeah. (CHEERFUL MUSIC) - I'm gonna have to use your nail polish, cos I didn't` didn't bring any downstairs. (GASPS) What colour are we gonna have? - Pink. - Pink and pink and pink, is it? Have we got any other colour? - Oh yeah. - Oh yeah. What? Ooh, green. Mm, very nice. That's enough, I think. All right? That's enough to choose from. - I want pink. - Pink. Pink one. - Yeah. - Oh my lord, this is gonna be messy, isn't it? - (GIGGLES) - You're not allowed to wear this to school, are you? - Yeah. - My mum and Maddie's bond is close, and they seem to have a very special connection, those two. Yeah. Mum's super proud of Maddie. - Do you usually do this, or does Mummy do it for you? - Mummy do it for you. - Oh, good on Mummy, eh? We colour in, or we draw. She loves to draw. Don't you? Or she loves to help out if I'm` if I'm baking upstairs, she'd be there like a shot. She'd be sitting on the bench, and she'd be wanting to help, but she just` she just likes to do anything with you, really. Wow. Beautiful. Now, we're not allowed to touch anything for a little while, are we? Maddie is just delightful. When she was first born, I was the first one to see her when she came out of theatre. I couldn't believe what I was seeing. I just wondered, 'How could this happen?' But she's proven that she wants to be here on the earth, and she's just amazed us all. Every day she comes here, she sparkles, and there's something different that she's learnt during the week. - This one's at home. - You've got that one at home? - Yeah. This one will be good. - I tell you right now, if it wasn't for Maddie, I don't think Rachael would be here today. Rachael was in a bad space. Although Rachael's got her other children to think about as well, Maddie was the one that really stopped her from going over the edge. I can't really say any more than that, that Rachael's had tough times, very tough times, and this wee girl has pulled her right out of that. - All I can say about that is Maddie saved me. Um, I... I wouldn't be here... yeah, if I didn't fall pregnant with Maddie. - She dotes on Maddie, and I can understand that. You know, with the special, special child like she is, and a loving little girl... you know, why not dote on her? - Six, seven, eight, nine, 10, 11, 12, 13, 14, 15, 16... - I've never left Maddie with anyone other than her brother and his partner. Simple fact is ` Maddie still needs lifting on certain things, and she's 42kg, so she's not a light child. So I worry if I have to leave Maddie with Mum and Dad ` and there's just certain things, you know, like the speech, you know. Mum struggles to understand Maddie sometimes. Yeah, so I still protect Maddie where it comes to respite care. I'm` yeah. It's still a no for me. (CHUCKLES) Even though I need it, but, yeah. (GENTLE MUSIC) Wow. - I will do next. - What next? - This one. - That one? - Yep. - Right on the top. What else? - This. This one. - We're decorating Maddie's wonderful helmet for her. Without the helmet, we wouldn't be able to go in and try a trike. With all her cupcakes and love hearts and 'dream big' sticker, eh, Mads? - And chewing gum, Mum? - I'll be taking tissues. (LAUGHS) It's gonna be a happy` yeah, happy` happy moment for her, just to see the joy in her face. Just to do something that most kids do on a daily basis that Maddie has never ever done. I've always left Maddison up to her own decisions, as such. If she wants to try something, you know, I'll help her try it. If she doesn't wanna try it, well, then I don't push her into it. I have no concerns at all. At all. I mean, she knows that Mum's always, always there, and I'll always catch her if she falls. Over here. - Go with Mummy. - Keep going. - Gotta cross over there. - Yeah. - Yeah. OK, hold hands again. - Come on. - Don't want you to hold my hand. - You don't want me to hold your hand. OK, you're a big girl now, are you? We're here at Silo Park to get Maddie to try a trike, and she can wear her helmet. Are you gonna wear your new helmet? - My` wear my helmet. My special helmet, and cool stickers. - Are you excited, though, to try a bike? - Yeah. - Yeah? - Mm. - Very exciting, eh? - Yeah. - Yeah. - How's that foot? Are we reaching the pedals? - Put your foot there, darling. (LIGHT-HEARTED MUSIC) - Hi. - This one towards you. Do you wanna hold that? - See, this way. You're riding a bike! You're OK. High five. Good job. Gotta watch where you're going. Whoo-hoo! That way. Good girl. (CHUCKLES) She's loving it. (LAUGHS) Look how proud she looks, even in her face. She's so proud. Overwhelming` overwhelming emotion. - It's my turn now? - Just` oh. - Mummy. - It's just amazing. (LAUGHS) - Mummy. Mummy. - Just amazing. - It's my turn? - It is your turn. It's very emotional. Something that, again, the surgeon said that she wouldn't do, and she's mastered it. (RELAXED MUSIC) Just extremely proud. I couldn't be prouder. This is such a big milestone for her. Just feel like that she's... a normal child, doing normal things. It's hard to describe the feeling. After waiting so many years to see my child do something, you know, that most kids do on a daily basis... yeah, I can't` I can't even describe the feeling. It's... It's just overwhelming. It's... Yeah, my heart at the moment is pouring out so much love for her. (LAUGHS) Yeah. I'm extremely proud. The next milestone is to ride a horse. (LAUGHS) - Oh, that's Bubba. - You're gonna go get Bubba? Go get her. 10 points. Go, Mads. - LAUGHS: No! - (LAUGHS) - Oh, has Maddie defied the odds? Well... for starters, she's not meant to be here, and she's had every odd put against her. She's put up her middle finger at everyone and gone, 'You know what? 'I'm here to stay, and I'm gonna prove you all wrong,' and she's doing that. This is her journey, and Maddie's living her best life at the moment. And I hope that that continues ` and it will continue. - You can't catch me. - Catch me. I'm in the corner. - I'm trying. - Turn right. Good girl. - LAUGHS: This is a classic. - I can go speedy! - Yeah, you can go fast. - (LAUGHS) (LIGHT-HEARTED MUSIC) - You need to catch up! - (LAUGHS)