The Sequal Trust Current Appeals February 2020
5 year old Marko from London has a diagnosis of Allan Herndon Dudley Syndrome. This is a rare disorder which only affects males and is caused by a mutation of Genes which disrupts development prior to birth. There can be moderate to severe intellectual disability as well as problems with movement, speech and various other symptoms. In Marko’s case, all four of his limbs are affected, especially his arms, so he has very poor control, is wheelchair dependant and non-verbal. His only method of communication is by using his eyes, facial expressions, touching and makes noises to get attention, with those close to him trying to work out what he wants through a process of elimination. As you can imagine this is extremely hard work, time consuming and frustrating for everyone involved. Taking all of Marko’s complex needs into account his Speech and Language Therapist decided to trial him on the school shared Eye Gaze system. He demonstrated that he was able to look at the screen and take purposeful control by eye pointing and has recommended that a PC Eye Mini with Surface Pro and pre-installed Grid 3 software would be the best option for all his present and foreseeable future communicational needs. With a desk stand, mounting bracket and carry bag the system will cost in the region of £3,450
19 year old Moshie from London has a diagnosis of Microcephaly. This is a condition where the head circumference is smaller than normal and may be caused by genetic abnormalities that are exposed to the fetus during pregnancy and damage the developing brain tissue. Moshie was born with the CMV virus and it resulted in him having 4 limb Cerebral Palsy, he’s wheelchair dependant, has epilepsy and is non-verbal. Moshie attends a special day school which caters for children with significant physical difficulties and because of his lack of body movement his Occupational Therapist (OC) decided to trial him on a loaned Eye Gaze system. This proved to be hugely successful as he demonstrated that he was able to have some control and let others know his needs and wants but unfortunately this device will have to be returned and he will be left with no means of communicating. The OC has recommended that a Grid Pad 12” with Eyegaze and pre-installed Grid 3 software would be of the utmost benefit to him for all his current and foreseeable future needs and she can’t stress strongly enough how it will reduce the levels of anxiety and frustration he currently feels at not being able to make himself understood, help with his education, enhance his overall health and well being and allow him to build on his communicational skills which in turn will increase his social opportunities and independence and she fully supports this campaign to help get him an aid of his own. The cost of this system for Moshie is in the region of £5,500
52 year old Paula from Kent had a massive stroke 2 years ago and was left unable to speak and is wheelchair dependent due to limited movement. Paula lives at home with her husband, who is her main carer and their 8 year old daughter. He said that prior to the stroke she had been a very active and independent person but now she struggles to do every day tasks and understandably becomes very upset and frustrated when she can’t manage to do something or get over what she would like to say. The main cause of her distress is the inability to be understood and not being able to interact with family, friends and health professionals. He added that in spite of all her difficulties she tries to remain happy and positive and likes to pass the time by doing crosswords, puzzles, painting and reading even though all of these can be quite hard work for her. Paula’s Speech and Language Therapist decided to run trials with her on various speech aids and taking all of her disability into account she has recommended that an iPad with Proloquo2Go software would be of utmost benefit for all her present and foreseeable future needs and this will cost £860.
25 year old Christopher who lives in the Wirral, suffers from many disabilities including Cerebral Palsy and Down’s syndrome with associated learning difficulties and dysarthria. His movement is adversely affected so he is a wheelchair user and he has no useful, understandable speech. Taking all this into account, it is understandable that Chris feels frustrated at present that he is unable to communicate with others; he cannot express his most basic needs or wishes and cannot interact with those around him. All of these negativities mean that he is somewhat socially isolated and depressed and his level of independence is greatly reduced.
Chris lives at home with his parents, both of whom are unemployed so there is little available monies in the household to purchase any communication system that Chris needs. He has been trialled on an iPad with specialised speech software, via the Adult Speech Therapy Centre in Wallasey, and he was able to easily navigate through the program, much to the delight of his parents and Chris, as this offers the ability for them to communicate properly with each-other.
The cost of this system, together with a wheelchair mount is in the region of £1,265
11 year old Rhys from Hertfordshire, was diagnosed in 2010 with autistic spectrum disorder and severe learning difficulties. His mum has told us that Rhys is affectionate and is always smiling and laughing and has a good sense of fun. He likes using the shared iPad at school and at home he enjoys various activities, for example watching fireman Sam, creative tasks and being chased by his siblings. He has severe learning difficulties in all areas and at present uses symbols to communicate his needs but this method of communication can only touch the surface of all he wants and needs to say. This can cause mood swings due to frustration and boredom. Rhys, is lucky to attend Lakeside school in Welwyn Garden City, Lakeside is an all age school for pupils with severe learning disabilities – many with autistic spectrum disorder system. Rhys has recently been working with the school Speech and Language Therapist (SLT) to improve his communication skills using the school iPad with Grid for iPad application.The SLT has recommended that he would benefit from having his own iPad to enable him to always be able to make his requirements know and to have continuity between school and home. They have documented that it would help him to communicate independently, increase his confidence and at the same time reduce his frustration of not being understood. His mum has turned to us for help as she is unable to afford this equipment herself. The cost of this equipment, iPad, software and protective case is in the region of £956
29 year old Jessica from London became a Sequal Life member in 1997 (aged 6) when her mother contacted us to help obtain funds for a computer system for her. She has a diagnosis of Cerebral Palsy Quadriplegia with very little hand and arm movement and no independent mobility. Over the years we have helped with funding for three systems but now unfortunately her current extremely well used and outdated computer keeps breaking down and is beyond any viable repair so again she finds herself in the desperate situation of needing a new device and simply not being able to afford it.
Jessica lives at home with her mother and has carer support for all her personal needs. Mum describes her as a lovely, very motivated, tenacious and eager to achieve young woman who wants to fully embrace life as best she can but she can become depressed when physical access and engagement with the world is difficult. She added that in spite of all her difficulties and through sheer hard work she has recently gained Degrees as well as a Doctorate in theatre studies (from Warwick) and she loves acting, singing, writing plays and poetry and Mum stress’s that none of this would have been possible without a computer which has been completely life changing for her and truly demonstrates what can be achieved when supplied with the necessary tools. Mum just wants her to have as happy and fulfilling life as possible as she loves her to pieces and none of this is her fault.
Jessica’s Neurodevelopment Therapist fully supports this application and has recommended, because typing is so extremely painful and slow for her, that a Laptop with Dragon Naturally Speaking Speech to Text software and would be the best option for all her current and foreseeable future needs. This will allow her to communicate in writing without assistance, making the world of difference to her study skills as well as her general health and mental well being. The cost of the Laptop with pre-installed software is in the region of £800
66 year old Farhad from London has osteoarthritis, spondylitis and chronic pain syndrome which are all getting progressively worse. Mobility problems, joint and muscle pain, stiffness and fatigue all contribute to difficulty with movement and communication. Farhad has been registered as disabled since 2007. He finds it very difficult to access anything outside his home, without help, leaving him virtually housebound. He lives independently with help from carers.
Despite his difficulties, Farhad remains positive and cheerful and has a passionate interest in photography. He also enjoys reading about politics, science, medicine, astronomy and electronics. His laptop is his gateway to keeping his mind active and maintaining his independence.
In 2008 Farhad’s Technical Instructor from the Ealing Day Centre contacted us to help obtain a laptop for him as it was the only possible way of him having independent communication and he simply couldn’t afford it himself. We did a campaign and he was supplied with a laptop with a trackball instead of a mouse as he has difficulty with fine motor skills. He has been totally reliant on it ever since. Unfortunately this extremely well used; laptop has broken down and is now beyond any viable repair. He’s in the desperate situation of needing a new one, so has turned to us again.
The cost of replacing the laptop for Farhad is in the region of £450
19 year old Max from Bury has a diagnosis of Downs Syndrome with Learning Difficulties, is wheelchair dependent for distance and is non-verbal. Max lives at home with his mother, step father and 11 year old sister and currently attends a local Adult Learning Centre but they are looking for a specialist placement for 18-25 year olds because when he’s turned 25 he will no longer be in education. They want him to have the correct equipment in place now as it will be vital for his communicational skills and social development and help him to reach his full potential which will greatly impact on his future independence. Mum describes him as generally happy young man who enjoys going to hydrotheraphy, baking, wheels for all and being taken to the cinema / theatre but he does become frustrated and upset at not being able to communicate and she knows that a speech aid will make the world of difference by enabling him to interact with those around him which will help relieve a lot of the stress he currently feels. They love him to bits and want him to have the best chances possible in life as none of this is his fault but they simply cannot afford it themselves so have turned to us for help. Taking all of Max’s complex needs into account his Speech and Language Therapist trialled him on various aids and has recommended that an iPad Mini with pre-installed Snap + Core First software would suit all his current and foreseeable future needs best and she fully supports this application. She stressed that the right aid will increase his confidence, independence, allow him to take part more fully in his education, build on friendships, make new ones, express his needs and feelings and improve his general health and well being.
The cost of the iPad and software is in the region of £500