The Sequal Trust Current Appeals September 2020
1) 50 year old James from West Sussex has a diagnosis of Cerebral Palsy, is wheelchair dependent and non-verbal. James became a Sequal Trust Life member in 2015 when his mother contacted us to help obtain funds for a computer system for him. Unfortunately, this current extremely well used and outdated device has broken down beyond any viable repair so again he finds himself in the desperate situation of needing a new device and simply not being able to afford it. At present, James has had to revert back to using gestures, facial expressions and body language to communicate with those around him. Those who know him well are skilled in asking the right questions and can interpret what he wants to say but when talking to new people he relies on others to speak for him. As you can imagine this is an extremely long winded and frustrating process for everyone involved, especially James, and having an aid really does make a massive difference to his already difficult life. These devices are truly life changing and the cost of this new Grid Pad Eye Gaze system for James with Grid 3 software, Windows 10 and wheelchair mounting bracket is in the region of £5,100
2) 79 year old Jeffery from Nottingham, has advanced Parkinson’s disease and is non-verbal. Jeffery lives at home alone and is supported as much as possible by his nephew. Before his illness he used to enjoy ball room dancing and still enjoys watching the local football team. His nephew has told us that he is bright but sensitive due to his illness and disabilities.At the moment Jeffery use an alphabet chart to communicate, this is very slow and means he needs one to one attention when he needs even the simplest of things. He has been working with a Speech and Language Therapist (SLT) who has trialled him on a Lightwriter which he is able to use very effectively and she considers the benefits of having his own device will be enormous. It will give him freedom of choice at the touch of a button. He will be able to ask for a drink when he needs one instead of having to spell the request out letter by letter. This will be especially useful as his condition deteriorates. As Jeffery is unable to afford this equipment we have been approached to help. The cost of a new Lightwriter SL50, for Jeffery, will be in the region of £2550
3) 15 year old Tiegan from West Yorkshire has diagnosis of Rett Syndrome and is wheelchair dependent for distance and she is non-verbal. This is a rare genetic disorder which mostly strikes previously healthy little girls just after they have begun to talk. Loss of motor control sets in and they quickly lose their acquired skills and are left unable to communicate, basically it locks them into bodies that won’t work. Tiegan did previously have a communication device but because of its age and constant use it’s broken down beyond any viable repair and she’s now left with only being able to communicate by using her eyes and facial expressions with those close to her trying to work out what she wants through a process of elimination which as you can imagine is extremely hard work, time consuming and frustrating for everyone involved. When she can’t get across what she wants to communicate she becomes very anxious and then will give up and withdraw.The thing she wants most in life is to be able to communicate and they are fully aware that this is only possible with a speech aid and desperately want her to have “a voice” again as it enables her to have access to education, greater independence, confidence and an overall much improved healthier and happier life. The cost of a new “voice” namely an Eye Mobile Plus device with Surface Pro Tablet with Grid 3 and Look2Learn software for Tiegan is in the region of £4268
4) 19 year old Rania from Oxfordshire has a diagnosis of Quadraplegia, is wheelchair dependent and non-verbal. At present Rania’s only means of communicate is by using her eyes and facial expressions with those close to her trying to work out what she wants through a process of elimination which as you can imagine is extremely hard work, time consuming and frustrating for everyone involved, especially her. She attends a local school which specialises in the needs of young people who have complex or profound disabilities. It offers learning programmes that build on individual needs, strengths and achievements and has recently secured access to a local college for some of the older learners. At the school, Rania’s Speech and Language Therapist (SLT) decided to trial her on their shared Eye Gaze system and reported that she was able to look at the screen and take purposeful control by eye pointing and others were able to understand her and meet her needs. She thoroughly enjoyed being on it which was shown by her facial expressions when exploring it and people’s reactions to her when she communicated messages. The SLT recommends this system would be of the utmost benefit for all Rania’s current and foreseeable future needs, especially when she transitions to college as it will increase her learning opportunities by allowing her to have a “voice” at college, home and in the community and she fully supports this campaign for her.The cost of this life changing Grid Pad Eye 12 Eye Gaze system with Grid 3 and Look to Learn software and wheelchair mount is in the region of £5900
5) 13 year old Chloe from Cambridgeshire has a diagnosis of Cerebral Palsy and Epilepsy which are both secondary to Polymicrogyria which has symptoms of problems with speech and swallowing, and muscle weakness or paralysis. Chloe is wheelchair dependant, non-verbal and totally dependent for all her care. Chloe has told us that before the current situation “I attended a wheelchair sports club, I love school, my teachers and friends. I really enjoy listening to and making music and baking. I am happy, funny, love people and very sociable. I can sometimes be sensitive and nervous in unfamiliar situations. I am bright, curious and understand much more than most people realise. I am strong willed and despite experiencing many illnesses and surgeries, I strive to be cheerful. I am amazing!After working with her Speech and Language Therapist (SLT) Chloe has been loaned, for 4 months, a Grid pad 12 with eye gaze. This has proven to be very successful. With a recommendation by her SLT that if Chloe was able to have her own equipment it would give her independent communication and will allow her to interact independently with family and friends and achieve her learning potential. As Chloe’s family are unable to afford the equipment themselves they have approached us for help.
The equipment recommended by the SLT is a Grid Pad 12 communication aid with to Grid 3 software plus PCEye mini with mounting bracket. The cost of this package is in the region of £5920.00