18-YEAR-OLD TILLY GRIFFITHS FROM STOKE, HAS JUST STARTED A FOUR-YEAR COURSE AT STANFORD UNIVERSITY.
What makes it truly remarkable is that Tilly was born with Spinal Muscular Atrophy Type 2, a neuro muscular condition which means Tilly has the equivalent strength of a new born baby. Tilly requires a 24hr care package and she is the first student from her part of the country and possibly the first in the UK to have the cost of this covered by the NHS when studying overseas.
Something else that has helped Tilly is a new powered wheelchair, a Piccolino, supplied by Precision Rehab.
Tilly has used wheelchairs and powered wheelchairs from an extremely young age as she explains: “Throughout my life, the chairs I have had have been a huge part of my life and everything I have achieved – allowing me to be the person I want to be. When I received confirmation that I would be able to start university thanks to the NHS covering the cost of my care package I knew I would need a new chair as my previous one was starting to show its age.”
Once funding has been secured from the Newlife Charity, she got in touch with Matthew James of Precision Rehab, who she has known since she was at Primary School.
However, this wasn’t a straightforward order as Tilly required a chair with very bespoke adjustments and the deadline for leaving for America was very tight. Tilly’s chair is fitted with a K120 seat which can accommodate paediatrics and small adults as its flexible design allows for growth and support as the seat system will adjust to accommodate postural changes. Upper body supports including thoracic supports can also be fitted and alternative seating options are also available including Jay and moulded seat systems.
The design of the chair and its ability to go into a horizontal position means it can also convert into a changing table so Tilly and her carer do not have to worry about always being in close proximity to hoists or slings.
Due to Tilly’s lack of strength, her chair has to have a highly sensitive joystick and Precision Rehab addressed this by fitting a
Micro Glide mini joy stick, while the R-Net Omni display unit allows Tilly to monitor her speed and functions and control all parts of the chair independently including Bluetooth and infra-red devices.
“I love my new chair” says Tilly. “Matt has done an amazing job to incorporate all the features I wanted – right down to a phone charger and new mouldings on the base of the chair as I wanted them to look sleeker.”
One of the most important additions to the chair was the fitting of Neater arm supports which Tilly has been using since starting middle school as Tilly’s mother Jackie explains: “When Tilly started middle school, she was determined to be as independent as possible and this included being able to feed herself and the arms supports from Neater Solutions enable her to do this and so much more. Not only do the arm supports enable Tilly to feed herself, use her laptop and play the piano they have also had a positive effect on her respiratory function. The arm supports support her forearms and rotate her shoulders back and Tilly’s respiratory consultant has continually been impressed with her respiratory function and believes it is probably down to her using her shoulders and therefore improving her posture as without arm supports Tilly’s arms would sit in her lap 24/7.”
Tilly is a true inspiration to other teenagers living with a disability. To be accepted into Stanford, she needed to gain A and A stars, which she achieved and recorded results which placed her in the top 1% in the entrance exam worldwide. Jackie continued: “We are incredibly proud of Tilly and what she has achieved. She is now settled into university life at Stanford and I cannot thank everyone involved enough.”
Matt is delighted with the positive feedback about the chair. “Over the years I have known Tilly she has never failed to impress me with her determination to live life to the full despite her disability. We believe that every client is unique and so go the extra mile to find a bespoke solution to ensure every client receives a chair which meets all their individual