Tilly Talks Tech

The Charity Changing Limb Difference Support Forever! |Jane from Limbo Foundation Tilly Talks Tech!

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Happy Limb Difference/Limb Loss awareness month!!! A time to celebrate  this beautiful community that I'm a part of - I'll be spotlighting this initiative every week this month so be prepared to be blown away and inspired!
 
One cricket field, hundreds of limb different humans, countless pop up tech stands and unlimited support. It started as a personal experience for Jane and now this charity is changing the game for the limb different community! What a beautiful sight to see! 🧡

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https://limbbofoundation.co.uk/

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SPEAKER_01

Imagine going from seeing nobody who looks like you at all to seeing hundreds all in the same field in one day. A cricket field full of technology, inclusivity, and innovation. A place where everybody belongs. That is the environment the Limbo Foundation creates. With the help of Jane. Disabilities and differences are not the be-all and end all. Although it can be a scary thing, there's amazing technology out there now, adaptation, and a community who will help you feel supported every step of the way. This is the story of the Limbo Foundation. Hello everyone and welcome back to Tilly Talks Tech, the podcast where we explore the future of technology and humanity. And this episode that's all about coming together in a community that supports and uplifts each other. One that's very, very close to my heart because it's a limp different community. Today I'm joined by Jane, the founder of Limbo Foundation, who is an amazing woman I've had the privilege of meeting and attending her events on several occasions. The Limbo Foundation is an organization that works on supporting Lim Different Children and their families. Whether it's from a pirate party, an adventure day down in Barnsley, it's always a party, it's always the place to be, and it has a real lasting impact. In this episode, we talk about the story behind Limbo, the children and the families it supports, and how technology and innovation are helping to open up new opportunities for so many Limb Different people and children alike. Let's give a super warm welcome to Jane. Hi Jane, welcome to the podcast. Thank you for joining me. So, how did Limbo Foundation even come about? How did your legacy begin?

SPEAKER_00

Tommy was born in um 2014. Um, Tommy's my grandson. When Katie was expecting him at the scan, they said there's something wrong. We're not sure what it is, we don't know whether his hands are missing, his fingers are missing. We don't know. Obviously, we ask for help, um, but as you know, limb difference is quite rare, and a lot of hospitals have never dealt with this, and they didn't have any answers for us, basically. And then, I mean, Tommy was born, and I had no idea that children could just be born missing a limb. I thought that the children I'd seen who were limb different like yourself had had sepsis or meningitis or an accident. I didn't know you could just be born like that. And we worried, as you know, we worried will he be able to do this, will that happen? By the time he reached about four, we suddenly realised that actually Tommy could do anything that any other child could do, he just did it in his own way, and he's a gorgeous little boy, he's loving, he's happy, and we just said, Why did nobody tell us this when he was born? Why was it all we got was this is not, you know, and this is worrying, and and it's not, it's it's just Tommy, and we sort of said, Well, do you know what somebody needs to do something about this? And sometimes, Silly, you just have to step up and say, Right, okay, that needs to be us. We decided we would try and put a charity together. There was the four of us, we'd got no money, we'd got no idea what we were doing. Um, but we wanted to give it a go. So we sort of threw ourselves into it, and to cut a long story short, our first adventure day, the first time we got people together, we had 28 people there, and I didn't sleep for a week before that because I was like, what if we let them down? What if they this is not what they want? Um, and at the last adventure day last year, we had 700 people.

SPEAKER_01

I know, which is crazy.

SPEAKER_00

Yeah, we're organized chaos, and yes, the kids can play and do whatever, underpinning all that is is a real sense of belonging, family, and these kids will have the support they need. You know, parents sort of messages in tears saying it's the first time they've never met another child like them, it's the first time they've never hidden their arm. Um at camp last year, I sat with a woman sobbing, absolutely sobbing. Not because she was unhappy, but because she'd actually seen her son being accepted come out of his shell. Just it's just awesome. Um, yeah, and that's what we do.

SPEAKER_01

It's so awesome. And like actually, funnily enough, when I was a kid, like I never heard about any days like this. Like, I'd never been to anything like that, like to the point where I believe Adventure Day with Limbo was probably the first time I went to an event which was like full of people who were limb different, like, and I I mean that genuinely, like that was the first time that I was surrounded by loads of limb different people, crazy because that would have been like what 15, 14, maybe the first time.

SPEAKER_00

Yeah, I mean, when when people come to us at sort of at 14, 15, that they're almost entrenched in hiding and being a bit nervous, and the little ones are just off, and it's gorgeous to see them playing, and and they've grown up with us, and you know, I mean, in these sort of eight years we've been running events, I can see children who've grown from like toddlers who are now as big as I am, and come running over to give you a big hug, and their grandparents have come to volunteer. It is a family, yeah.

SPEAKER_01

Tell me about like the stuff behind it that makes it happen.

SPEAKER_00

We're all volunteers. Um, we are putting more grant applications in, but um we work from Limbo HQ, which is Adam and Katie's garage, which has been converted, um, to the lady from Arizona who messaged us and said, Please can I come and look round your organisation? We had to say, No, it's a garage in Barnsley. But that you know, people are surprised and think we're bigger than we are. We're not. We were getting lots of um requests from people who were in the same situation who had found out they were having a baby or just had a baby with a limb difference and didn't know where to go. So, one of the first things we set up was um a welcome pack. This is our welcome pack, it has um a baby growth, a t-shirt, and a mitten for upper limb different children that my Darfield knitting ladies do for when their little arm gets cold.

SPEAKER_01

Yeah, my nana knitted me some of them as well.

SPEAKER_00

But that's it, so they knit them for us, and we've got loads. So all the booklets, and we send this is our limbo Teddy. No, and you'll see he he has a little card there, and Amy, who does all our welcome packs, her daughter Isabel has um a limb difference. Um, and I I don't know if you can see it says this bear was hugged by Isabel before because we found we went she went in Monday and she'd lined all the teddy bears up on the floor, and she said, What are you doing, Isabel? She said, I'm just giving them all a hug before you put them in so they know they're going and they're loved. Oh, bless our heart. That was the baby pack, and then nursery. The first time a child leaves their parents to nursery, nursery children seeing one another children, and and it's just sort of tips that you know you wouldn't maybe have thought of. We moved on to um schools, so we have school booklets, uh, and then the kids wanted to see themselves in books, so they did a book. This is Miley Difference, and it's they each have a page. So that if you've got um somebody like Tommy, we could have said, Look, Tommy, look, this little boy is seven or eight, he's doing this, he's doing that, and this is possibly our most important one because this was um made by our slightly older um young people, so Lottie, who you know, Tommy, Max, um, Lexi.

SPEAKER_01

Oh, Lexi, she was just in the other day getting a hero on as well.

SPEAKER_00

And so they've got these now, and if they if they don't feel like explaining, but they don't want to be rude, or they can say, Do you know what? Just have a read of that, and that's yeah. Um, so those are the things that we send out, and you know, we've got our bike adaptations.

SPEAKER_01

Yeah, can you talk to us a little bit about that, like how that came about and how it was designed?

SPEAKER_00

Um, yeah, um, basically, Tommy kept falling off his bike because um he's obviously missing just one hand, so he was leaning over and he couldn't steer. And we tried various things, sort of velcro, and in the end, Adam said, Look, okay, mum, let's buy a 3D printer. Not got a clue what we were doing, as ever. Um, we bought a really cheap 3D printer between us, me and Adam. He taught himself how to print, then he taught himself CAD. This is version 304, um, and he printed it, worked on the inserts. It's it's been developed. The insert used to be like foam that we covered with felt, now it's 3D printed with the squashy stuff. It's really simple, and it has to be simple because we could easily fasten his arm into something, but if that was the case when he fell off, which Tommy frequently does because he don't know where he's going, if he didn't bit pull his arm out, he'd have broken his his arm several times now. So that that's good. Um that that's gone all over the world.

SPEAKER_01

Yeah, that's so cool. Obviously, with Tommy, like you can like observe him, see what he struggles with. Because of the community nature of it all, there'll be so many other kids who are struggling with the exact same thing. And through working with Tommy, you're able to like create these things that are gonna make an impact for like probably like the majority of the kids who do come to Limbo Day.

SPEAKER_00

Yeah, I mean, we we've got, as you know, sort of um eight or nine youth ambassadors, and we test things out on them, literally. Um, we work with other companies who um who send us things to sort of try. I know Tommy tested a it's called a nimble, it's not scissors, you put it on the end of your finger and it cuts it. Isabel tested a um chopping board, cutting things, uh Callum did a toothpaste dispenser, so we we use them because they'll be honest, you know, that don't work.

SPEAKER_01

That's the best thing about kids.

SPEAKER_00

Yeah, oh yeah, they'll tell you if it's not working.

SPEAKER_01

You know what else I was I was toying with the idea of because we always have people on the podcast who are like adults, and I was like, actually, these kids have so much to say, you know? Why don't we do an episode where we just get all the kids on and we just you know have a have a real combo?

SPEAKER_00

It'd be great to get the youth ambassadors on.

SPEAKER_01

Yeah, it's not easier all building up a foundation like this, and there's probably loads of people out there who have a cause they're so passionate about, but like you at the beginning, they like don't know where to start at all. What were like the main sort of battles for you when you were forming this organisation, and what is like still a struggle even today?

SPEAKER_00

One of the hardest things was to make sure we were doing everything right, so that um once you are accepted onto the charity's commission as a registered charity, that opens lots of doors to you. You can't expect or hope that businesses and big companies will donate to people they don't know unless you are regulated. So that's the first thing. You have to get that right, and it it's a slow burner and it takes about a year, and it comes back, but they keep helping you and saying that you need to alter this. I would say reach out to other charities, contact Limbo, we'll tell you what we did. Build a team around you, build a family of supporters. And if parents of children are saying, Can we help? the answer is yes, you can. Please tell us what you can do. Be aware that it will take a lot more time and effort than you ever dreamed it would. Um, and I think what we struggle with is everything's a balancing act. We want to help everybody. Um, but sometimes we haven't got enough people, enough time, enough structure. Um and we've I've just put in an application for a big grant. I sort of took a deep breath, rang who it was and said, are we too small a company to apply for this grant? And they said, No, no, just do it. And use your local community. Barnsley's been brilliant. I know everybody laughs and says Barnsley's, you know, but the Barnsley people have been absolute stars.

SPEAKER_01

Barnsley is great. That's so cool. Yeah, you have a right team around it. I love it, and that's so evident as well. Like when you're at the events, like I've been to the Pirate Party, I've been to the like adventure day down in Barnsley, like the atmosphere and the energy is like so electric and like fulfilling as well. Like, everybody is just here to support each other. But anybody who hasn't attended those events, like, how would you describe the energy and the atmosphere and what happens on those days to anybody listening?

SPEAKER_00

It's quite overwhelming um for some people. I know um I had one mum say I turned up and I could see all this happening, and I just sat in the car and cried and I didn't know what to do.

SPEAKER_01

Really?

SPEAKER_00

Because the the emotion of almost like I found my tribe and now need to see if they'll accept me. But you you walk in, um, it's a cricket field, as you know, but it's a huge cricket field, and we try and have activities that are fun and messy. Uh we try and have prosthetic companies, we have people that can help as much as we can. There are certain things that are non-negotiables. We give everybody a t-shirt of the same colour with the same logo on that says limbo on, and yes, it costs us about I think it costs us about five, six thousand pounds last year for everybody to have a t-shirt, but that's a Hilaldion because that gives everybody that sense of belonging, that absolute sea of colour, yeah. Yeah, that sea of red, that sea of purple, whatever it is. I belong. And and parents say they won't take it off. They've slept in that t-shirt for three days. Can you tell them they've got to take it off now?

SPEAKER_01

They need Jane to step in and be like, guys, take the t-shirt off.

SPEAKER_00

And now there is a thing after Adventure Day, they put up a picture of them in their t-shirts from previous years, and you can see how many they've attended by, how many colour t-shirts. Um the atmosphere is is great. Everything from I I have some retired ladies who sit and do knitting to do the knitted mittens. We have um creature arc who comes with a snake and spiders, and last year we had the climbing wall that we told Woody wouldn't get down there and did, and everybody loved it. Um we have gaming van, face painters, we've got axe throwing this year.

SPEAKER_01

Oh my goodness, that is crazy.

SPEAKER_00

And we and we have people message and say, How much money will I need to bring? Come on, we're like, No, everything's free. We always said we didn't want any family to miss out because of financial circumstances, and then that comes back in droves because our parents say, Look, we could afford to pay, we want to pay, and we're like, No. So what we have in October is our October fundraiser. And we the first year we did it, we said to parents, can do you think that you and your child could do something fun in October and raise a pound a day, so you raise 31 pounds for us in October. They raised 13,000 pounds, and they were raising uh hundreds, thousands, and they were they were doing what they wanted to do. He's read a book to his little brother every night this month and been sponsored. This is this is my favourite story ever. One mum decided in her wisdom that she would get a little girl to paint a rock every day because she liked painting rocks. On the final day, she put a picture on of her, completely pink, covered in pink paint, standing in the bath. And she put, Mummy's really glad that we have made all these rocks. Mummy's also glad she will never paint another rock ever again in her entire life. We've got no income, no income stream, regular income stream, and we don't charge for anything. And people said that that won't work.

SPEAKER_01

Uh-huh.

SPEAKER_00

But it does, because you've seen it works.

SPEAKER_01

And you know what? I think it is. I think it's because you're doing what you're so authentically passionate about, and like because it comes from such a deeper place where everybody wants to support something that's doing so much good, like it's a lot of work for you guys, but it's also so rewarding, even when there isn't that solid income stream, like because of the sheer impact. Like, clearly, everybody who works on this is like so beyond passionate about it, and that just bleeds through to every single person I feel like who comes across Limbo Foundation, which is why I wanted to even like share it on YouTube and things.

SPEAKER_00

The grant form I've just filled in asks how many of your volunteers have got lived experience. Well, to be honest, 99% of them are. I mean, you actually, you're a volunteer. You get it, you get what what these kids are, and you know, I mean, that the that little boy's face when your hand went across the table. Oh, it was so sweet! So funny. It was like it's just but that's it. I mean, it's no good sort of just saying oh, and there is this, it's like it's here.

SPEAKER_01

Yeah, that's what I was gonna say. Like, there's so much going on on an adventure day and all sorts, but there's also like so much technology, and there's so many like options for like how you can progress forward in your life with a limb difference. Because some people would opt to not wear presettings and run around going crazy, like you see the toddlers doing, but some people who are maybe a little bit older they're really intrigued, and the kids think it's epic when you see these Bonicans and stuff. What has been like the craziest tech that you've seen at your event, and how do you find the children's reaction to that?

SPEAKER_00

It's really difficult to say. I think the most memorable to me was the first time that Open Bionics came to Adventure Day, and Tommy and Lottie must have been seven. They sort of went over to play, and that the it was like a switch, it was like we couldn't get them to come away, and the the joy in their eyes, they were absolutely just laughing, and and we were like, No, you need to give it back. I was like, No, we want this, no, we have to give it back. They were like, We we want one, and it's giving that aspiration, it's okay to aspire to this, yeah. And I think I mean I've seen so much from koala to the little Joey's that is just like a little sort of toy that they then put on their bike to the hero arm that now several of our children have got, it is just it's just so much, and so I mean, we you know, we keep looking for new things for Adventure Day, um, extra things we you know the more we can sort of give to people. And if you come across anybody or anything that you think, you know, obviously we've got you down to come this year again. Um, but if there's if you come across anybody that wants to come, um there's always a a welcome.

SPEAKER_01

Um yeah, of course. It's the highlight of my year, and even when we had the big hero three like week the other week, we had a bunch of kids in and we were all talking about when we're gonna get together for limbo adventure day. We look forward to it.

SPEAKER_00

You don't come to one limbo day, you come once you've been to one, you come to them all.

SPEAKER_01

What do you think could be like the future for Limb Different Kids? When you started Limbo and you had this purpose and this mission, how do you see the future like you know, unfolding for that Limb Different community?

SPEAKER_00

Um is is looking much better for them than it was 10 years ago. Um, because I think uh Limb Difference is being normalized more. Yeah, I think it's seen more online um and in films, on television, in books, even children's programmes. We work with Sky TV who who've got Happy Town, and that's got a limb different character in. I think there's more understanding today about diversity, and be it sort of a physical diversity or being neurodivergent, people are more accepting. Not all people, some people are horrible, and we still have to work really hard on that. Also, tech-wise, silly example if you like. Tommy's at secondary school now, and he's got a smaller laptop, he's got a Chromebook. Well, technology, sort of 10 years ago, you didn't have a laptop in school. Tommy's got a laptop and he can type, he's got a you know, a smaller one, he can carry it round. So I think things like that and 3D printing is isn't it, isn't it? It it's it it's just what you can make with this. His music teacher was amazed that he'd got um an I don't

SPEAKER_01

adaptation to play the drums well it was just a piece a single piece of printed um yeah 3D printer stuck on the end literally put it on his arm it took his dad about an hour I think and he was like so the the technology will help them and also I think the the normalization um is he's good definitely I mean I was speaking to two other girls on the podcast the other day and like all of us are like in our 20s they're amazing in the representation space like I had Ashley on who was Bionic Barbie like she was in Barbie and Wicked as being limb different and then Gracie's in Bridget and which is like the most dreamed show on Netflix you know and both of them are literally like paving the way when it comes to representation and we were talking about how it's so clear to see that impact like the stairs and the pointing has just gone down immensely which can only be down to like one one or two things education and representation right and you're very good at both of those things.

SPEAKER_00

Yeah I mean do do you feel yourself that that limb difference is becoming more normalized 100% 100% yeah and and you must get fed up of the same sort of questions that the kids get you know how do you lose your hands what can you do how do you do this right yeah leave it alone you know you know what I'm gonna get the kids on this podcast and we're gonna ask them some questions that they I can guarantee they've never been asked before and we're just gonna we're gonna have a good time but yeah so it's good we just will keep going so yeah definitely well it's been so good chatting I can't wait to get to limbo in August and if there's anything I could do in the meantime I'll be checking out your social pages resharing what I can and for anybody who wants to follow your journey or find out about these events where can we find you across socials or your website whatever it is social media we have two groups on Facebook one is an open group that anybody can join which is just limbo foundation um the other is a closed group which is for parents and families we're on Instagram which is limbo foundation and uh www dot limbo foundation.co dot uk but if anybody wants any of our literature or information my email is just jane at limbo foundation.co.uk please get in touch if you know anybody who's got a limb different child or wants some help we literally don't charge for anything I'm not touting for business you can have whatever resources we've got if you need them awesome thank you so much Jane you do amazing work thank you so much for speaking to me again and I hope everybody goes and checks all of that out and I'll see you I'll see you at limbo day yeah best of luck with everything all right love bye oh that was so good honestly Jane is a legend every single time I go to a limbo foundation event I leave feeling so like fulfilled and the other thing is is like it's so right you never see other people with limb differences.

SPEAKER_01

When you're in someone like a cricket field where everybody has a limb difference I literally find myself like double taking other people who do have hands when I leave that scenario because you get used to just seeing everyone with no hands. It's crazy. But yeah definitely do check out limbo foundation on socials their new website coming soon they do incredible work and they also showcase loads of sweet tech which can hopefully assist these kids into the future should they want to use it. Thank you so much for listening to this episode of Tilly Talks Tech I really hope you enjoyed it if you did make sure to like comment and subscribe share and let me know who else we need to get on the podcast I will start sending out invites and filling up these diaries if you are attending any sort of limbo foundation day I will see you there especially the one in August I cannot wait and yeah I'll see you next time