Lucy is six years old and has Agenesis of the Corpus Callosum (ACC) a rare birth defect which means the middle part of her brain is absent. Lucy’s condition means she has no sight, low muscle tone, poor motor coordination and chewing and swallowing difficulties so she has a gastronomy tube for feeding. Her posture hasn’t developed properly so she can’t sit up by herself so her condition means having the right equipment is essential for her health and wellbeing.
Her Mum, Jane, explains: “Lucy was diagnosed with her condition at five days old. When she was a little baby she had a traditional baby pushchair but it had no padding so we knew that Lucy would need specialist equipment that would benefit her needs and development so she was both comfortable and happy.
“Lucy was one of the first to have a ‘P’ Pod from SOS and it’s fantastic for her. Because it’s moulded her torso gets the support it needs. The beanbag design makes it easy for us to put her in a reclining position as she can get quite chesty so sometimes she benefits from being in different positions.
“It’s great for us as a family as well it’s so easy to use and move around. We can take her in the garden, which she really enjoys, and when we’re visiting friends and relatives because it’s essentially a beanbag it means it’s easy to put in the car. It makes it much easier not having lots of bulky equipment. We also loved the fact we could personalise it so we chose to have Lucy’s name embroidered on the front.
“Lucy’s been going to Saxon Hill Special School in Lichfield for two years so we knew we’d need to get equipment that benefits her in a school environment. We needed a seat which allowed her to both sit up and lie back. She also has dislocated hips so we couldn’t opt for a traditional stander so she had a customised Straddle Seat made by SOS which allows her to be in a better functional position and keeps her in an extended position reducing the stress and discomfort through her hips. This has helped her to join in classroom group activities with her class mates and work on developing more functional activities.
“The Custom Straddle Seat is attached onto a Glider Mobile Base which has a rise and fall action to allow her to access things at different heights and also a tilt function so her teachers can recline her should they need to. We also use it at home when we’re dining as a family. It means she can join us at the dinner table using the rise function to achieve the required height so she always feels included in whatever we’re doing.
“As a family we like to get out and about so we chose the Mojo Stroller buggy which has a moulded seat custom made to give the exact support Lucy needs to sit well supported and comfortably. We like that it has big sturdy wheels which is great for rough terrain, it also looks like a traditional pushchair and we could also choose the colour. The good thing about SOS equipment is that it is tailored to suit the individual so once Lucy had the cast taken of her body in its correct seating position that was it. All her equipment has been developed and tailored to suit a variety of needs.”