The Sequal Trust Current Appeals March 2019
15 year old Madison from West Yorkshire, has Rett Syndrome and she needs a Tobii Dynavox–Eye Mobile Plus with Snap + Core and Look to Learn software, plus a wheelchair mount. The cost of this package is in the region of £5450.
87 year old Challinor from Nottingham, has advanced Parkinson’s disease, is wheelchair dependent and non-verbal. He was diagnosed with Parkinson’s 13 years ago, plus in 2012 he had a hip replacement. Challinor has always been a hard-working man having been a bus driver for 47 years, prior to that he was in the R.A.F. He now lives in a care home, having managed to live alone until June 2018. He is unable to speak but has no difficulty understanding everything that is said to him, he also still has the capacity to make decisions. His only means of communication over the last 6 years has been with a Lightwriter; unfortunately, this has broken and is beyond repair. A replacement will cost £2k.
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. Nazla is cared for by her mother who is a single parent and she is extremely committed to making sure that Nazla has the best opportunities possible to achieve her aims. 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 and decided upon a Grid Pad 12 Eye costing £5,500 as the most suitable for Nazla’s needs.
40 year old Thomas lives in Birkenhead. Although he normally lives with his parents, he has been a hospital in-patient for the last 18 months following a stroke caused by an intracranial haemorrhage. Thomas was also diagnosed with Myotonic Dystrophy 3 years ago, a condition where muscles often contract and are unable to relax. Other symptoms may include cataracts, intellectual disability and heart conduction problems. Unfortunately, it is a progressive disease, meaning that symptoms worsen as a person gets older. As a result of all Thomas’s health issues, he has very limited leg movement and is unable to vocalise as he has a trache tube in place. Prior to his stroke and the MD symptoms progressing, Thomas was a Senior Care Worker with BUPA, on the Wirral, and was very much a part of his community, enjoying a happy and integrated social life. However, due to his present condition he is no longer able to talk and has lost most of his independence which is an extremely sad situation for him, his family and friends. We are looking to provide him with an iPad with free speech app which will cost £350.
15-year-old Joshua from Essex has a diagnosis of Downs Syndrome with significant learning and speech difficulties. His speech is largely unintelligible which makes him extremely difficult to understand. These impact upon his social and expressive language. At school he has the use of an iPad with proloquo2go software which helps enormously with his communication giving him a voice and enables expressive communication. Unfortunately, as this equipment was purchased by the school, not specifically for Joshua, the iPad cannot be taken home. The cost of the iPad with pre-installed Proloquo2go software plus tough case with shield glass and glass clear screen protector is in the region of £620.
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. Her Special Needs Tutor, who is an Eye Gaze Practitioner at the special school Daisy attends, has trialled Daisy on eye operated speech aids for many weeks and it is clear to all that this is the way forward for Daisy, not having the limb function to access a device with her hands. It motivates her and she is eager to have a device of her own which will be her ‘voice’ for 24 hours a day and which will allow her some control of her life. Daisy’s condition will not improve so it is imperative that her communicational needs are met now so that her future prospects will improve as she progresses educationally and socially. 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