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Hero's trip to BOLDkids

Updated: Sep 1, 2023

A team of researchers at BOLDKids are studying this brain plasticity in children with limb differences, they are drawing maps of the brain and how it adjusts to limb differences.

As parents of children with a limb difference, we have a front-row perspective of just how awesome they are. Since Hero’s birth her brain has been adapting to life without her right hand. Time and again she’s proven herself to be an excellent problem solver, resilient and determined (most of the time!).

A team of researchers at BOLDKids are studying this brain plasticity in children with limb differences, they are drawing maps of the brain and how it adjusts to limb differences. Beneath all their high-tech findings (which are beyond my capabilities to understand) they’ve also been finding out some awesome little titbits about our kids.

As their studies have progressed there are some patterns emerging, patterns that are backed by science, and the general vibe is that our kids with limb differences are awesome. They’re proving what we as parents have known all along, that our children’s brains are incredibly adaptable, that they can see things in a way that others can’t and that they can find solutions to problems we two-handed folk can’t always see.

Loving what we were hearing from the team, we couldn’t wait to get involved and contribute to their study. After a chat with two of the lovely BOLDKids team – Maggie and Ally - Hero was super keen to take part and we arranged to visit them at their Cambridge facility so they could take an MRI scan of Hero’s brain in action.

At 6 years old, Hero was one of the youngest participants and from the moment we arrived the team were fantastic! The impressive selection of snacks aside, they literally got down on her level and engaged in all the little challenges and activities they had planned. Watching your child complete these little challenges - opening padlocks and using a screw driver – should be a mandatory experience for all parents.

I like to think of myself as an unflustered mum, I like to think that I’m able to take a step back and allow my child to work through healthy levels of challenge and struggles. But watching her fumble with the padlocks and the zips, I had to fight the urge to step in and offer help on more than one occasion. But resist I did – mostly because the BOLDKids team were there watching – and low and behold, without any input from me, she achieved every one of the tasks in her own way and in her own time. She didn’t need me to step in. She needed just a little more time.

Following this humbling start to the day, it was time to head through the luscious gardens to visit the replica MRI machine. Having never experienced one for medical reasons, Hero was naturally curious and a little apprehensive about the replica machine. Maggie took the time to show Hero the images taken by the machine, showing everything from brains to fruits. A good game of ‘Guess the Fruit’ was followed by Hero jumping up onto the MRI table and having a go at being rolled inside the machine.

Then it was time for the real deal. After a little chocolate button snack stop it was time to get kitted out with all the sensors. Hero got to choose the most outrageous colours for the bandages that would hold the tiny sensors in place; on her chin, arms, legs, torso and head. By the time she was done she looked like a mummy, and she couldn’t stop giggling. For her, by far the most stressful bit of the day was having the bandages around her head (her face wasn’t at all covered) as she’s not a fan of having anything on her head normally!

It was time to load this rainbow mummy into the real MRI machine. For Hero, this meant having some headphones on and watching some of our favourite Pixar shorts while the little sensors flickered like butterflies on her body. Ally from BOLDKids stayed chatting to Hero while she watched the cartoon and the rest of us got to watch as the image of her brain took shape on the screen in the room beyond.

After a little while, Hero had had enough of the bandages on her head and she asked to leave the MRI. She was unravelled and came round to see the images of her own brain we’d managed to capture. Despite labelling the image as “a bit gross” she was super proud to have taken part. She took her brain scan and her certificate into school and told the whole assembly about seeing inside her head and finding out more about how brains adapt so incredibly to all different bodies.


This summer, the team are continuing to seek volunteers (both adults and children aged 5.5 - 8.5 born with an upper limb difference!) for their MRI study! The BOLDKids study investigates how the body is represented in the brain, and will take no more than a few hours to complete in either London or Cambridge.

They will cover the cost of transport and participants will be compensated for their time. For each participant, they also give a donation to either Reach or the LimbBo Foundation UK.

They are nearing the end of their study and have just a few months left, so if you’d like to take part in this exciting study, not to mention enjoy some snacks and see a unique image of your own brain – then get in touch!

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