How Barnsley-based LimbBo Foundation Support Children with Limb Differences
Whether it's by holding talks, hosting activity days or offering adaptations, Barnsley-based LimbBo Foundation supports children with a limb difference and their families
It all started with Tommy. During early pregnancy his family were given the devastating news that a complication had occurred and Tommy was going to born missing a limb. ‘At my daughter-in-law’s scan we were told there was something wrong,’ says LimbBo trustee Jane Hewitt. ‘We were given a black and white A4 sheet and the offer of a termination. But when Tommy was born, we realised he was a little powerhouse, and having one hand didn’t stop him.’
Nothing could get in the way of Tommy achieving anything he wanted, and LimbBo set out to prove that that’s the same for every limb different child.
‘We’re Barnsley-based but we do work throughout the UK,’ says Jane. ‘We started in 2018, we have six trustees, nobody is paid (we all volunteer), and we don’t charge for anything we do. We always say that no child should miss out due to financial circumstances. That’s really important to us.’
LimbBo offer prosthetics for children with limb differences, including 3D printed arms and bike adaptations. The LimbBo bike adaptation was designed by Tommy’s dad Adam, allowing children the ability and freedom to ride a bike. ‘We send those all over the world,’ Jane adds. ‘We’re sending one to Australia this week. We work with universities and other prosthetic charities (including working closely with Koalaa which aims to give every limb-different child under 18 a soft prosthetic).’ When Tommy was a few months old he was fitted with an NHS prosthetic but his family felt that this was covering up his limb difference and they wanted to celebrate it, not hide it. Greg Lynch, who has a limb different child, kindly made Tommy a 3D printed Buzz Lightyear arm and put his family in touch with Team Unlimbited, who helped LimbBo to buy 3D printers and become a registered charity.
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The Foundation also offers family support (both online via a closed Facebook page, and in person), adventure days and Christmas parties. The Foundation’s adventure days have proved more and more popular each time they’re held. At their first meet-up there were eight limb different children and at the meet-up planned for August, there’ll be 400 attendees (of which around 100 are limb different children). ‘We’re a family charity and the family of these children are important,’ says Jane. ‘When we say your limb different child is invited, we’re saying your family is invited, and it doesn’t matter how many people that is. It’s often the first time that these children have met another limb different child and also been in the majority. You can see the parents crying as they’re introducing themselves to each other. Of course their siblings don’t bat an eyelid either. We asked for some quotes after the third or fourth meeting and one child simply said “no one looked at me funny”. That gets me every time. It’s like they’ve found their tribe and no one is doing things for them or feeling sorry for them, they’re just being kids.’
LimbBo recently held a meet-up at Yorkshire Sculpture Park (YSP) where LimbBo families took part in Sculptural Adventures in the Hidden Forest and Outdoor Sculpture Building, Come Rain Come Shine, led by artists from YSP’s Learning Team. ‘The big mural in [YSP’s] café is all about difference and love and there are two limb different characters on there through them working with us. Representation matters because the kids can say “look, they’re like me”. We also recently held a day out at The Foundry Climbing Centre in Sheffield and the kids were absolutely amazed because the instructor only had one leg.’
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Children have also made their own booklet called My Limb Difference. ‘They’re brightly coloured with pictures of them doing whatever they enjoy doing with their own description about themselves,’ says Jane. ‘For example, Tommy’s shows him in his cub uniform and it says “I like going to cubs and I’m going to my first camp soon”. We also have a booklet where parents have shared their experiences of finding out about their child’s limb difference and where they are now. These booklets will be sent to hospitals and doctors’ surgeries to continue spreading awareness of limb differences. We’re working with Nosy Crow and Harper Collins as advisers for books with limb different characters and we’re trying to get those books into schools. I’m thinking of little things that don’t cost much but will make a big difference.’
All of this support is free of charge. ‘Someone asked me at adventure day “what’s your business strategy?” But we don’t have one,’ Jane says. ‘The people of Barnsley, and wider Yorkshire, are amazing. Local schools have chosen us as their business charity, businesses have supported us since day one, the local knitting club runs raffles and so many people are always keen to help us. My fear is that we’re growing so big that we’re going to need more support and there may come a time that we’ll need to employ someone. But we are passionate that that money will never come from donations so we need to find some way of getting a grant to allow us to do that.’ For now the LimbBo Foundation will continue to support every limb different child.
