A bright, bubbly and happy 11-year-old who lives with her mum, dad and sister in beautiful Canterbury, New Zealand.
Lily and her sister are surviving triplets and spent the first 6 months of their lives in NICU after being born at 24 weeks gestation. Lily has Cerebral Palsy Dystonic Quadriplegia, which means her whole body is affected with variable muscle tone. She’s non-verbal so loves to use her Eye Gaze device to help her communicate, play games and watch videos like any other kid her age!
Lily’s personality really shines through in her choice of wheelchair and seating! She recently picked out a custom Aztec Gold Quickie Iris and Bumblebee Yellow Spex Seating to match! The super cool colour isn’t the only great thing about her new chair… It also has a specified centre of gravity to make it easier to push and it’s fitted with flip-down arm supports to make it easier for her parents to transfer her using the hoist. It’s fitted with Spex Comfi Arm Support Pads which are nice and wide to help keep her elbow from falling off the support and have extra padding to provide plenty of pressure relief.
Lily’s previous wheelchair was fitted with dynamic hardware such as footrests, back canes and a head support mount. These parts move as she pushes backwards and everything comes together again when she relaxes. We fitted these dynamic parts to her new wheelchair and the ‘Artisan by Medifab’ team created custom padding to wrap around everything, protecting Lily and providing pressure relief.
Lily has a wide variety of equipment at home to help her throughout the day, which means it is important to get everything out of the way on her wheelchair for transfers. As well as her flip-down arm supports, she also has Spex Swing-Away Lateral Supports. Her Comfi lateral covers have an additional gel-foam overlay and double layer neoprene which give additional pressure relief and protect Lily when she goes into dystonic tone.
Lily has a Spex Classic Back Support, shaped with positioning cubes to fit her posture. The cover has been customised to enable a Supracor insert to be added, which adds more breathability and helps to keep her cool in the summer. The ‘envelope’ in the cover allows the insert to be removed in the cooler months and when the cover needs to be washed. Lily’s Spex Centrepoint Shoulder Harness stabilises her trunk and is perfectly shaped to accommodate her feeding tube.
Lily’s cushion is a Spex Superhigh Contour with custom ischial well. The Superhigh Contour shape has a taller pommel and thigh supports, which support her low tone and helps guide her into place during transfers. The deeper ischial well prevents her from sliding forward when she goes into dystonic tone.
Lily has had a Spex Extended Lateral Head Support for a long time. As she uses her Eye Gaze device a lot, it is important that her head can stay in the exact same position. The shape of the Extended Lateral provides plenty of support whilst not obstructing vision and still allowing her to move her head from side to side.
Lily uses a wide variety of equipment day-to-day, including her Sharky Bathroom Chair for showers and relaxing soaks in the bath and her standing frame which was customised by Medifab to be a ‘Lily-Special’!
Lily and her family have got to know the Medifab team over many years.
Lily’s mum says the team are “good at listening and great at coming up with creative solutions”. We have loved working with you and getting to know you, Lily!
If you enjoyed reading about Lily’s story, you can watch her video below: