Help required in the Tyne area. Please if there is any chance of solving this from a distance get in touch.
This message has come from the girl’s speech therapist. Jenny.VanNiekerk@nuth.nhs.uk
Jude Pullen from Inventing the Impossible/Big Life Fix suggested that I contact you in regards to a plea for help with a young girl who is locked in and needs to be able to communicate via BCI.
I have put out a lot of enquiries and to be blunt, I just need this to happen! She is an only child, 12 years old and we feel has some understanding of what’s going on around her. She has no reliable and consistent movement we can make use of except perhaps, moving tendons in her forearm when attempting to activate a sensor switch.
Please see my original email below.
Jude suggested I mention key words such as – ‘must be good at making stuff, basic electronics, Arduino, Raspberry Pi, and can 3D print / design’. I hope that makes sense to you!
Again, I can’t begin to express how grateful I would be if you could help – we are completely stuck. I’m sure the family would support any TV/media coverage to promote yourselves?!?
Jenny (Speech Therapist)
I am a Speech and Language Therapist working in the Royal Victoria Infirmary in Newcastle. I’ve been glued to the programme Inventing the Impossible and have been bowled over by the clever engineering used to improve people’s lives.
I am working with a 12 year old girl who presents as being ‘locked in’. She has been with us since November 2017. We cannot make use of her eyes or any form of consistent movement for communication.
I feel she at least understands yes/no questions and could make choices from 2. There is significant atrophy on her brain so we don’t know how much she understands beyond that – we just don’t know.
I wondered if you had any in-roads in regards to using Brain Computing Interface (BCI) technology for communication? She is an only child and I am desperate to give her parents some good news re communication but I feel I have tried everything I can. Obviously, I am really, really hoping that you and your team could please help us to tailor-make some technology to help us access her understanding (through auditory feedback and prompts and voice output) to help her express herself and at the very least, take some ownership of her care via yes/no responses and basic choice making.
I can’t begin to tell you how much this would mean to her family. Hoping you can help.
Speech and Language Therapist Acute and Neuroscience
Level 4 – Block 2
Clinical Resource Centre
Queen Victoria Road
NEWCASTLE UPON TYNE
Tues, Thurs and Fri