The Sequal Trust Current Appeals July 2019
14 year old Nazla from Wiltshire has a diagnosis of West Syndrome with scoliosis and epilepsy. She is non-verbal and cannot walk as all her limbs are adversely affected, so she is a wheelchair user and is hoisted for all transfers. She has limited movement in her arms which prevents her from accessing objects via that method.
At present, Nazla uses a simple E Tran frame to communicate which is simply a large piece of plastic with symbols or pictures stuck to it. This method is very basic and slow and extremely frustrating for both the user and the reader and as Nazla is unable to successfully access a speech aid manually, the Speech and Language Therapist trialled her on an eye gaze system which was extremely successful. We require the sum of £4,860 to purchase an eye operated Grid Pad for her.
4 year old Daisy lives with her family in Derby. Daisy has bilateral cerebral palsy which means that she has very poor and limited limb function and is a wheelchair user. Daisy is also non-verbal and currently can only communicate via facial expressions and eye pointing. She has very little intentional movement and relies on others for all her physical needs. These conditions all greatly limit Daisy’s independence as she is so dependent on others to interpret her most basic needs and wishes, 24 hours a day. The system found most suitable for Daisy is an eye operated Grid Pad with specialised software programs and a floor stand. The cost of this system is in the region of £5,825 of which we still need £4,325.
8 year old Lilia from Derby, has a diagnosis of Rett Syndrome. 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. In Lilia’s case, she has associated epilepsy, scoliosis, hypotonia and hypermobility; her skills in speech and communication have already regressed. As Rett syndrome is a degenerative condition, Lilia will deteriorate with muscle weakness and spasticity and will lose the ability to walk. She already uses a wheelchair in certain situations. It is also likely that she will lose the ability to use her hands purposefully. The equipment recommended by the SLT is a Grid Pad 12 communication aid with to Grid 3 software plus the Tobii PCEye kit with mounting bracket. The cost of this package is in the region of £5920.
22 year old Tom from Redcar, Cleveland has a diagnosis of Landau-Kleffner syndrome (LKS) which presents as Autism. This extremely rare childhood epilepsy usually starts between the years of 3 and 6 and affects twice as many boys as girls. Its main features are poor speech and language skills (which may improve over time) seizures and problems with learning and behaviour. The underlying cause of LKS remains unknown.
In 2012, Tom’s parents approached us for help to provide him with the vital communicational equipment he needed as they weren’t in the position to afford it themselves. We did a campaign and he was supplied with a laptop which had been specially programmed for his specific needs and he’s been totally reliant on it ever since. Unfortunately this extremely well used, old piece of equipment has broken down beyond any viable repair and he needs a new device and they have had to turn to us again. Tom’s Special Needs Tutor trialled him on various communication aids and has recommended that an iPad with Social Quest Inner Voice software would be of the utmost benefit to him for all his current and foreseeable future needs and this will cost £450.
23 year old Rebekah lives in Oxfordshire and has a diagnosis of Cerebral Palsy Quadriplegia is wheelchair dependant and non-verbal.
This is a specific type of Cerebral Palsy that refers to difficulty in controlling movements in the arms and the legs and those who have it will not have paralysis of the muscles, but rather jerking motions that come from stiffness within all four limbs.
Rebekah attends a day college that has Life and Work Skill courses specifically for learners who have Special Educational Needs. Rebekah is unable to point or sign because of her lack of body movement so her Speech and Language Therapist (SLT) decided to trial her on the college Eye Gaze system. The cost of this system is £7,233
8 year old Florie lives with her family in Herts. Florie has Rett syndrome which is an extremely debilitating brain disorder, depriving mostly little girls who have developed as normal until round the age of 6 -18 months, of the faculties they have thus far developed. Florie regressed at 16months and now sadly lives in a body which no longer works for her; she is a wheelchair user as she is unable to walk and she has no useful speech so cannot interact properly with her parents and siblings.
The system decided upon consists of a Tobii I-12 Gaze Interaction with Communicator and Grid 3 software programs and wheelchair mounting system. Not only is this system a communication aid, it is also an environmental control which will allow Florie to access other systems within her own bedroom space such as, closing and opening her curtains or switching on the radio or TV. As she grows into her teenage years this system will provide her with a greater degree of independence and will increase her confidence.The cost of this system is in the region of £9,383
13 year old Leah from Devon has a diagnosis of Cerebral Palsy, is wheelchair dependant and non-verbal.
Leah attends a special day school which caters for children with significant physical difficulties and because of her lack of body movement, she can’t point or sign, her Speech and Language Therapist (SLT) decided to trial her on an Eye Gaze system. The cost of the Eye Gaze 1-12+ Interaction with Grid 3 software and wheelchair mount will be in the region of £8,792
6 year old James from Surrey has a diagnosis of severe 4 limbed cerebral palsy, epilepsy, is wheelchair dependant and non-verbal. When mum was in her 39th week of pregnancy she suffered a ruptured aneurysm which sadly resulted in him being deprived of oxygen and led to him having a catastrophic brain injury.
James attends a special day school which caters for children with significant physical difficulties and because of his lack of body movement, he can’t point or sign, his Occupational Therapist (OC) decided to trial him on the school Eye Gaze system. The cost of a “voice” for James with wheelchair mount is in the region of £7,000
16 year old Asher from, Wilts, has a diagnosis of bilateral dystonic cerebral palsy, auditory neuropathy and is also visually impaired.
Asher lives with his mother who is his main carer; she has told us that he is a happy, laid back, inquisitive and loving young man who is desperate to communicate with everyone around him. Asher is non-verbal and uses facial expression, vocalisation and eye pointing to express himself. He finds it difficult to use his arms effectively due to increased tone; he requires hand over hand support for controlled movement, meaning that direct access communication aids are unsuitable. The cost of the recommended equipment, Tobii Dynavox I-12 Gaze interaction with grid plus Look to Learn Complete I-Series, PCEye and Connect-it Table Top Mount, is in the region of £9550.