Spina bifida: Pupils design walking aid for teacher's daughter
A group of schoolchildren in County Tyrone have come together to help design and build a specialised walking aid for their teacher's daughter who has spina bifida.Without treatment, spina bifida can sometimes lead to a range of lifelong issues such as problems with mobility, because of nerve damage, and in extreme cases it can cause paralysis.Claire McIlvenny found out early in her pregnancy that her daughter, Penny, had the condition.Doctors told Claire she met the criteria to qualify for pioneering prenatal surgery for the condition in Belgium.
"It was amazing what they were able to do, because before the surgery Penny would have had 10% chance of mobility and after it increased it to 50%," Claire said."Penny spent a few weeks in the neonatal unit and we were just so happy to have her here with us, but at the same time we didn't know what was ahead."It was clear early on that she was going to have mobility issues, but we could see for such a small person she was so resilient with such a big personality, and she was just determined to do things."
Penny's story
Penny, who has just turned two years old, has been attending child physiotherapy appointments in the Southern Trust.She has limited mobility and mostly uses splints on her legs to help her stand and to help her practice walking.As part of her physiotherapy, Penny uses a walking stand, consisting of two parallel bars and a platform to help her strengthen her leg muscles.Until recently, she was only able to use the equipment every few weeks when she attended the Children's Development Centre in Lurgan.
"The idea is to try to help Penny achieve those motor skills, so things like rolling, sitting up, crawling and now we've progressed to practicing walking with her," said Jayne Wilson, Penny's physiotherapist."This is mostly done with a set of parallel bars that she uses in the clinic, and she is such a motivated child and a delight to work with."She had been making great progress and one day Penny's mum and I were chatting after one of her sessions and talked about how it would be great if she had something like the parallel bars at home so she could practice with it daily."The next week, when Claire was at work in St Patrick's College in Dungannon, she recounted this conversation to some of her colleagues, and an idea was sparked among some of the school's staff.It culminated in a small group of staff and pupils within the school's technology and art departments combining their skills to design and construct a bespoke walking stand and parallel bars for Penny to use at home.Claire said she was completely overwhelmed when they presented her with the piece of personalised equipment.
"I just couldn't believe it," she said."I was very emotional to see it and I was just speechless."The fact that the school came together like this to help Penny along in her journey, just means so much."The walking aid was finished off with a special design of Penny's favourite cartoon characters, drawn by the school's art pupils.Claire added: "How the girls decorated it was just fantastic and Penny just loved it, as soon as we got it home she went over to it straight away and she knew it was hers."She has been going from strength to strength and she's been taking more steps using it, she even dances on it now."
Kyla, 13, one of the art pupils who worked on the equipment's design, said she really wanted to be a part of it when her art teacher told her about the project. "We really wanted to get involved and paint it, it made me really happy," she said.Her classmate Donatella also helped with the project.She said: "I think our teacher knew we were good at art so she chose us to work on this special project, but it was just really nice to be involved."Clare has been taking regular videos of Penny using the equipment and showing it to school staff and pupils so they can also track her progress.Alfie McGlinchey, a technology technician in the school, helped oversee the equipment's construction.He said: "It's just great seeing all the videos of Penny using it to practice her walking and even dancing it, It does your heart the world of good."
"It's just been so lovely for the school to be involved in a project like this and for such a small gesture to make such a big difference," said principal Catherine McHugh.After several weeks of using the walking stand at home, Claire recently took Penny to an appointment with her physio Jayne."I was so pleased with the progress Penny had made, the number of steps that she is taking now before she tires has really improved and you could tell she was enjoying this new sense of independence," said Jayne."It is just so lovely to see the school community come together to support Penny."Just before the school year ended, Claire brought her daughter Penny into meet some of the students and staff who helped make her equipment."That was a really lovely moment, Penny was all excited to meet the girls who drew her cartoons and I wanted them to see the difference it has made to my wee girl's life," she said.
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