The Sequal Trust Current Appeals January 2020
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.
70 year old Charles from South London had a severe stroke last December leaving him paralysed down the right side of his body and suffering from Aphasia. This is a complex language and communication disorder that can occur after a stroke as a result of damage to the language centre of the brain affecting the production or comprehension of speech. At the time of the stroke Charles worked part time on a self employed basis and lived in rented accommodation but due to the severity of his condition he hasn’t been able to return to either and currently resides in a Nursing Home which provides him with the 24 hour care he needs. The stroke has also affected his memory and temperament as well as giving him other problems related to his lack of mobility and he’s now reliant on a small group of friends for outings as he still enjoys eating out, music and being taken out, especially to the cinema. The cost of the complete package comprising of an iPad, Grid 3 software and a wheelchair mount is in the region of £1585.
5 year old Rose from Hertfordshire 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. In Rose’s case, she has very poor limb control, is wheelchair dependent and non-verbal. She can only 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. Taking all of her complex needs into account Rose’s Speech and Language Therapist decided to trial her on the school shared Eye Gaze system. She demonstrated that she was able to look at the screen and take purposeful control by eye pointing to various words and activities. The cost of this life changing Tobii system with Table stand is in the region of £9,760
8 year old Ronnie from Hertfordshire, who due to suspected shaken baby syndrome, by his father, has fluid on his brain, global development delay, vision impairment, brain abnormalities and speech impairment. He lives at home in an adapted bungalow with his mum and brother. His mum is his full time carer. Ronnie’s mum tells us, on the application, that he is a happy boy who is caring and kind. Although he can get very upset and frustrated with his lack of speech and ability to be understood. His speech and language therapist (SLT) has told us that Ronnie has very slurred speech which impacts significantly on his intelligibility. He tries to put sentences together but the longer they are the more challenging it becomes to understand him and the more disheartened he gets. With all his complex needs in mind his SLT has recommended that an iPad mini would be ideal to enable Ronnie to meet his full potential and give him the ability to communicate in all aspects of his life. As Ronnie’s family is unable to afford this equipment themselves they have turned to us for help. The cost of the complete package for Ronnie, iPad Mini, Grid for iPad software, with a rugged case and a stand, is in the region of £800.
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.
15 year old Angel from Dorset has a diagnosis of Cerebral Palsy which affects all four of her limbs, is wheelchair dependent and non-verbal. In 2012 Angel’s family approached us to help obtain a speech aid for her as this was her option only of having any form of independent communication and they simply couldn’t it afford themselves. Her Speech and Language Therapist ran trials with her on various devices and recommended that an Eco2 communicational aid, now obsolete, would be best device for all her needs at that time. We did the campaign, it was supplied and she’s has been totally reliant on it ever since. Unfortunately, this extremely well used, old piece of equipment has broken down beyond any viable repair and she’s in the desperate situation of needing a new “voice” and our help again. She is now left with only being able to communicate by using her eyes and facial expressions and those close to her trying to work out what she wants through a process of elimination. As you can imagine this is extremely hard work, time consuming and frustrating for everyone involved, especially Angel and the biggest worry is that she’ll give up altogether and withdraw into herself. We are looking to provide Angel with a replacement device, namely an Eye mobile with Surface Pro, Grid 3 software and wheelchair mount which will cost £4,296.