Limb Difference with a Smile

LIMBBO FOUNDATION LIMB DIFFERENCE WITH A SMILE

Jane Hewitt tells us more about how LimbBo Foundation started and how it is building the self esteem of limb different children globally.

THE LimbBo foundation was set up to support limb different children and their families. We are a small, but growing, organization based in Barnsley. We work hard to raise awareness as well as designing and 3D printing prosthetic adaptations such as bike attachments. We now send these adaptations worldwide.

Tommy D is the inspiration behind LimbBo. Tommy is my grandson, his father, Adam is my son.

During early pregnancy Adam and his wife were given the devastating news that a complication had occurred and their baby was going to born missing a limb. Adam remembers the lovely chatty nurse pausing and going quiet, “she looked concerned. She told us she had to go get a colleague. My heart sank and I tried to reassure my panicking wife that everything was ok….I knew it wasn’t. Another more senior looking nurse came in, she looked concerned, they talked quietly and then she left. The nurse turned to us and nervously told us that something was wrong with our baby.”

In that moment Adam had never felt pain quite like it. They explained that the baby Adam and his wife had tried for so long to have was going to be born disabled and missing a limb and could have potentially more problems. Crying and shaken, Adam and his wife were ushered into a cramped little room, walking past the waiting room full of expectant parents who didn’t know where to look. They were given a basic black and white generic pamphlet about limb difference, which didn’t help one bit as it was dry and clinical. They were also given the option of abortion. They left feeling numb and confused. As a family we were feeling worried, isolated and however lovely the nurses were, they couldn’t give us the reassurance that we needed. 4 months later, baby Thomas arrived. Adam describes the moment, “as I held him for the first time all of my worries disappeared, yes this little boy was missing an arm but he was beautiful. Initially, it was difficult to see him try to pick things up and not be able to, what hit me deep down was that things like this were going to be a day to day occurrence, but I was prepared for this. What I wasn’t prepared for was how he adapted everything to make things work. He began to use his feet, pinned things down and carried things with his ‘little arm’,

nothing could get in the way of him achieving anything.”

Fast forward a couple of years and we could see that many of our fears were unfounded and born out of lack of knowledge. Yes, having a limb difference causes challenges, but our children will throw themselves into anything! Archery, Jiu Jitsu, gymnastics, swimming, lego … ‘I can do it’ an oft repeated phrase. They can do most things - just in their own way.

Realising that we were in a privileged position, we were having a conversation one evening about how ‘someone’ should help families who felt like we did and were feeling isolated. Why shouldn’t that ‘someone’ be us?

We started with 4 trustees from a garage in Royston (well actually we started in a bedroom, but very quickly had to move to the garage, 3D printers are very noisy!).

Our latest campaign is to get brightly coloured posters of limb different children, all just being themselves, into maternity units and hospitals throughout the UK. Parents told us that this is what would have helped them most.

“THESE CHILDREN HAD ‘FOUND THEIR TRIBE’ AND IT SHOWED IN THE BEAMS ON THEIR FACES.”

“AS A FAMILY WE WERE FEELING WORRIED, ISOLATED AND HOWEVER LOVELY THE NURSES WERE, THEY COULDN’T GIVE US THE REASSURANCE THAT WE NEEDED.”

Having put out an appeal on our parents’ Facebook page for photographs we thought we’d be able to create a poster. We actually have 8 posters at the minute – showing children on a zip wire, baking, riding bikes, playing rugby – in other words just being kids.

A large part of our work is creating and shipping the bike adaptation that Adam designed. It’s a very simple concept, but means that a limb different child’s posture can be corrected when riding their bike and have more control over balance and steering. These have been delivered worldwide to places such as Turkey, Istanbul, the USA, Jakarta, Cape Town … we are stunned at how far information about our charity has spread.

We registered as a charity in 2018 and had our first meet up with 8 children and their families. We wrote a blog post after that day saying “my eyes won’t stop dripping” which was a favourite phrase of Tommy’s at the time. It ended with, “We were loud, proud and not easy to miss.”

These children had ‘found their tribe’ and it showed in the beams on their faces.

We honestly feel that showing our children they aren’t on their own is the most important thing we can do for their self-esteem.

Our latest meet up was in August this year – 50 limb different children, their siblings, families and volunteers. Not forgetting prosthetic design communities Koalaa and Open Bionics, researchers from Durham and Oxford University – LimbBo is like a huge, fast growing family. The children could relax and be themselves. They walked around linking little arms; leaving prosthetic legs around the field if they felt like it.

We work alongside schools, doing visits and assemblies, as well as Zoom sessions with school science groups interested in 3D printing or Bionic arms. If we can educate children maybe we can eliminate the stares, the unkind words.

We have a closed group for parents, supporters and families on Facebook. It is closed to create a safe place to chat, get support and ask questions. Nothing is trivial – if it’s worrying you then ask and share. Questions from “what is the best sippy cup?” to “my son has just had his foot amputated but wants to play in the mud – how do I keep him clean?” Our charity doesn’t charge, not to join, not for adaptations, not for adventure days. We are in the position of having amazing supporters including many of our parents. After our latest meetup one of our children, Max, set up his own fundraiser. Max said “everyone that knows me knows that I’ve been a one legged boy for about a year and a half now, but up until last week I had never met or seen another child like me, I thought I was the only one!! Thanks to LimbBo charity, last week I met 49 children with limb differences. No one looked at me funny or wondered why I had a prosthetic leg, I was normal. The day was made possible by other people making charitable donations from fundraising. I really want to be able to go to a meet up every year and for that to be possible I must do my bit by raising what I can.” Tell me your eyes aren’t dripping now, and tell me why I’ve written this article when Max is much more eloquent than I am!

If you want to join us, follow our progress, volunteer, our website is limbbofoundation.co.uk where you will find more information about our work, our story, our social media accounts. Get in touch you and you will be assured of a big Yorkshire welcome!

Author: Jane Hewitt, Trustee of LimbBo Foundation Twitter: @LBofoundation Instagram: @limbbofoundation Facebook: @limbbofoundation