A gift from super mum!
Play time for children at RNOH’s Prosthetic Rehabilitation Unit just got a lot more fun thanks to a donation of soft play equipment from Claire Wooding, mum to RNOH patient Jadon and founder of the Fibular Hemimelia Support & Awareness UK charity.
Whilst Jadon, two-and-a-half, gave the new equipment a very thorough test drive in the RNOH Legacy Room – clambering through tunnels and launching himself off steps, we caught up with Claire about the charity and why she chose the RNOH for their first charitable donation.
Jadon was born with a condition called Fibular Hemimelia, which is a partial or total absence of the Fibular bone. At 11 months old Jadon had an operation to remove his ankle and it was about six weeks after his surgery that we came to the RNOH for the first time. That’s when we started the process of getting Jadon’s first prosthetic leg and we’ve been here ever since with his prosthetist, Marta. Marta has always said he needs to learn how to do things as a normal child; when he had his first leg he hadn’t started walking yet so he learnt that his prosthetic was a part of his body and he didn’t need any physiotherapy.
We come to the RNOH Stanmore to have different legs made as he grows. Sometimes the inside has to be remade as his leg gets thinner, other times he just needs to have it lengthened a little bit. We come a lot more often that I thought it would be! It could be anything from 6-8 weeks to every week depending on when his leg’s being made. At the moment he is growing like a weed!
We have had our ups and downs and by no-means is an amputation the last of it; it is not a solution but it is a life changer. It has enabled Jadon to do all the things a young fit and healthy two-year-old boy or girl should be doing. He runs, jumps with both feet off the ground and he absolutely LOVES soft play!
The idea behind the charity began as a private chat group on Facebook after my 20 week scan with Jadon revealed that something wasn’t quite right. It was a very scary time because none of the health professionals around us knew what was wrong. Even after we finally knew what his condition was called, I always found myself having to explain everything. There was no information or support available for Fibular Hemimelia and so I decided to start a Facebook group for mums in the UK where we could connect and support each other as parents. It wasn’t long until we started to welcome people from all over the world to the group and that’s when I had the idea for publishing a booklet sharing our different stories and experiences of Fibular Hemimelia.
We’ve been running for just over a year now and are currently in the process of registering as a charity. As a new charity we were looking for ideas of how we could help people. Jadon has been coming to the RNOH for a long time and the staff here are lovely, so we thought this would be a good place to start!
We have donated soft play equipment including a rocker, step ‘n’ slide, and an arch. For children with prosthetics it helps to see how they are using the leg – how they are stepping up or climbing under things. When children are little, the rocker is good for them to sit on for lengthenings – you can get them to sit still and check the leg and put things on – a bit of a diversion tactic!
Marta Geada, RNOH Prosthetist said, “We are very grateful for this donation and we’re so proud of the work developed by Claire Wooding with the Fibular Hemimelia Group. I feel honoured for the opportunity to be part of the prosthetic rehabilitation of this amazing group of patients.”