Rupert’s Standing Table
Posted 8 April 2022 in Stories
Rupert lives with a condition called Spinal Muscular Atrophy (Type 1), which is a rare genetic disease, causing the loss of nerve cells that would otherwise help to control movement. Because there are a reduced number of motor neuron cells, a child or adult with Spinal Muscular Atrophy experiences muscle weakness and wasting, making regular movement and everyday activities harder to carry out.
After hearing about Remap through a friend, Rupert’s mum reached out to see whether a bespoke table could be made to help Rupert stand, whilst in his Orthotic appointments. Previously, Rupert had been using a big exercise ball to balance against whilst standing. This had proved to be very unstable, which meant Rupert was unable to entertain himself or even play, which became very upsetting. As a result, practicing standing was no longer something Rupert wanted to engage in.
John, one of our volunteer engineers at Remap, wanted to get involved. He wanted to create something for Rupert that could enable him to enjoy standing practice again, that would provide him with the confidence to stand. After creating a successful standing table, Rupert has since, been able to play with toys in front of him, allowing him to rotate sideways, and reach for objects next to him. Not only that, but the table has height adjustments and gets taller as he does, which means he can use it more and more, as he gets stronger at standing.
The table has been highly valuable to Rupert’s development and has allowed him to get back to normal, everyday activities. It has been made slightly smaller than previous tables used by Rupert’s family, making it more reliable to use within the household environment. It has given Rupert back some independence to play but, more importantly, it has bought back Rupert’s winning smile.
After having spoken to Rupert’s mum, we could see the difference that custom made equipment can bring to individual lives:
“It is challenging to know where to source custom made equipment. It is typically very expensive to buy, and often it isn’t the right size or design for a child’s specific needs but Remap offers the perfect solution. By upcycling old items, like a coffee table, remap made Rupert a table that is perfect for his needs, and will grow with him. I am so grateful to Remap- Rupert now stands for over 45 minutes and smiles and plays the whole time!”
If you, or someone you know, may benefit from custom made equipment, get support now by visiting: https://www.remap.org.uk/referral-form/