The tech helping teen with Duchenne muscular dystrophy live his musical dream | BBC News

My name is Eli Crossley. I'm 16 years old. I am currently in year 12. I'm a musician. I'm a singer in the band Ask You. We play a mixture of original music and cover songs. They're basically all just my really good friends and we just get together and kind of enjoy playing music. If we could do that as like a job, that would be a dream. Eli has Duchenne muscular dystrophy, a progressive condition that gradually weakens his muscles. He was three and a half when he was diagnosed and the doctors basically told us that he would be in a wheelchair by the age of nine or ten and the life expectancy was early twenties and there was really very little that could be done. Music, I think, helped me with ambitions in life. It's kind of picked me up and it kind of helped me forget about my condition and something that I just absolutely love. I've got Sam Fender here. One of his songs I went through a phase of absolutely loving him. As each day passes and Eli loses his mobility, he's been testing an assistive technology that has the potential to keep him playing music longer. Simple things such as like drinking, lifting a cup when I don't have any support for my arm is something very difficult and it's really, really frustrating and the SmartSuit aims to help with that arm function. It helps to lift your arms up and basically just help you achieve some of the normal everyday things such as brushing teeth, such as drinking water, such as eating food that people without disabilities can do. So I use this ring, if I pull it up and it keeps going up and that is a pretty good position that helps support my arm and then if you press the other way it goes down. It could be slightly more comfortable but I feel like it's definitely got a lot better than the first prototype and things are always improving which is definitely a positive. The exoskeleton is being developed by his mum's charity, which she started after Eli was diagnosed. What I wanted was to find a cure for Duchenne so we wouldn't even be having to have this conversation but it didn't happen because medical research happens slowly and Duchenne is a tricky disease to treat. When I see him testing the suit it does feel a bit bittersweet and as the disease has gotten worse I think every incremental gain that you can get as his mum I'm so grateful for and I see that this is going to be incremental yet profound in terms of allowing him to keep doing the things that he loves. Hopefully it will be even cooler and look like a gold ring or something. What do you think about this from a fashion perspective? Oh yeah definitely, it can't cramp my style. When you're in the business of designing assistive products you're often in the business of designing products that people don't want to have to use and that's a tricky scenario right, that's a tricky situation. Hayley has spent the last 20 years designing assistive technologies. If you've got a condition that's holding you back from being able to do the things that you love, that's something that we want to overcome with technology. The team are looking to integrate artificial intelligence with the suit so it will automatically adjust for different tasks. So they would go to lift a drink, maybe not as fast as they would normally lift it or perhaps in a slightly different way as they'd normally lift it. Suit knows, no this is normally how you drink and just steps in, gives you that extra strength and you can make the drink. The idea being to lessen the mental load on the user. If I'm playing every single night or if I want to hold the microphone at any point the smart suit would really help with that. But this innovation is not just about Eli. Sometimes needing your parents to help you pour water into your mouth is really not a nice thing and I just hope they can experience it and it can help them as much as it can help me and I really hope it will help the whole community. I love this. With grant funding from British Council and Arts Council England, Eli has been given the chance to cross the Atlantic and perform at America's mega music, film and tech festival. Ready to go. The fact that we're going to showcase not only the work of the charity and the suit but also Eli's incredible musical talent is just, which is really incredible and I just can't wait. How are you feeling about it Eli? You know, it's just a day in the life really. In here we put on Stormzy in 2016 and we put on Ezra Collective, Amy Winehouse's first US shows around the time of Back to Black so this area here in terms of international presence for UK music is incredibly important. Crispin has been taking talent to Texas for over two decades. He's got Eli a slot on the day stage. Their careers, they can meet their agents, the labels, the PR people, the people who can sync their music to the Hollywood movies, they're all going to descend on this town in the next few days. It's so funny that this little corner of almost nowhere in America is a place that's been so important for UK bands. I think he's going to love it. And now it's Eli's time to shine and show the world his talent as well as the smart suit that will help keep his dream alive. But first they've got to draw a crowd. There you go, thank you so much. The dream is maybe someone, you know, ends up seeing me and the end goal is to get a music contract with my band ASCII. Tech industry has ignored disability for all these years and now we're going to change it by building an assistive arm device and my son's playing. I'm playing at the International Day Stage at two o'clock. Oh, that's amazing. I hope you can come. Cool, thank you so much. Thank you. Wednesday, I mean. For Eli to really make it in showbiz, he's got to learn how to party like a rock star and master the art of small talk. I'm a bit intimidated. News travels fast here and Eli is soon invited for a headliner interview. Welcome to the studio, Eli Crossley. Even the head honcho turns up to meet the budding star. You've welcomed him over here, making his dream come true. He's making our dream come true to be able to showcase up and coming talent. That's what we always do at South by Southwest, but incredibly happy that we can provide a platform for him to tell his story, to inspire others, to give others hope and optimism about the future. And then a very special guest dropped by to offer some sage advice. Jon Bon Jovi. No. Yes. Jon Bon Jovi. Jon Bon Jovi, you're joking. I'm not joking. When? Nothing else matters unless you write. Everything else is second to writing, because you've got to write the song. What? But that wasn't the only surprise. Paddy Dunning of Temple Lane Studios, who's recorded with Westlife to R.E.M., was at the festival. When I heard that you want to be in the music industry, we had to do something together. So what we've done with the Giant Project is we've organised you a recording session in Ireland. And this is from the Giant Project, which is the building of the biggest moving statue in the world, which celebrates giants. OK? So when you're in Ireland, we're going to scan you and we're going to keep your avatar, right, and you are going to be put up onto the Giant. I'm looking forward to you coming over. Thank you so much. Yeah, yeah. Great, great. Yeah, listen, great. Oh, wait, you're talking about me? Oh, yeah, so I hear you're a fan of Sam Fender. No way. No, no, no, no, no. Please, no, don't do this to me. Sam has recorded with us, right? And we're going to do a FaceTime in on the recording session, OK? So Sam and Dean and the guys... I don't know what to say. Are you looking forward to Wednesday? Terrified. Terrified? So nervous, yeah. Why nervous? I mean, people are going to show up. I don't know what it will be like. I don't know. Yeah. But, yeah, I'm excited. I'm not afraid of dying anymore. It's something that happens to everyone, and I just am hopeful that I can do as much as I can in my life. And my biggest fear is leaving the world without accomplishing everything I want to accomplish. It just takes honesty. Thank you so much, everyone. CHEERING