Eleven-year-old John Junior (JJ) used to be a lively young boy, able to explore the world and attend a mainstream school. But then he was diagnosed with ALD, cerebral x-lined adrenoleukodystrophy, meaning he suddenly lost his ability to walk or talk.
JJ knows what it’s like to run around and play football with his friends. But then he slowly began to lose the ability to see, walk and talk, and is now completely dependent on his family and carers. He suffers from dystonic episodes, which cause his arms to become very stiff. Children are eager to tell their families every thought they have, and run around to burn off their seemingly endless energy. There is no reason why this shouldn’t be the same for life-limited and disabled children, but more often than not, it isn’t possible.
Being able to use Eyegaze has given JJ the chance to do things independently for the first time in years, without needing help from his parents or carers. He moves his eyes around the screen to create pictures or select an image. His family and carers were unsure about how much JJ could see, but when he uses Eyegaze, his eye movement increases and he is able to focus on what he is doing on the screen.
For JJ, a Lifelites donated Eyegaze has given him the chance to bring creativity and control back into his life. It makes it possible for life-limited and disabled children to paint, play games, and communicate, by tracking eye movements with a special infrared sensor, enabling to move the cursor around a computer screen.
JJ receives Hospice at Home care from his local children’s hospice service, ellenor. Besides painting, he enjoys the drumbeats program on Eyegaze, as he used to love playing the drums before his condition deteriorated. His mum said it is wonderful to see his eyes lighting up, and his body changing to be more relaxed and engaged.
For JJ’s family, it is a great way to socially interact with him. JJ’s younger brother enjoys watching him use the equipment. The adaptive iPad allows JJ and his brother to play games, create music together or have a laugh. The entire family has lots of fun using the Lifelites iPad where they can take pictures and make videos together, and so create memories to last a lifetime.
The Lifelites donated assistive technology gives JJ, and thousands of children like him, back some of his independence, a new way to engage with his family, and a chance to show them how much he loves them.
Evan is three years old and is classed as a SWAN, meaning he has a syndrome without a name. Evan is severely delayed in all areas of his development and is unable to sit up, walk or roll, and unable to communicate verbally.But the Lifelites-donated Mobile Magic Carpet enables Evan to play, control something himself!
Little Madison has Down syndrome, a chronic lung disease, is oxygen dependent, and has a weak immune system. She cannot eat food orally but has to use a flexible feeding tube instead. She also has sight problems, might need hearing aids and as a one-year-old, she already had open heart surgery. But with our donated Mobile Magic Carpet, she can comfortably move around, explore bright lights and play with the moving bubbles around her. For some time, she can escape the confines of her conditions.
Two year old Noah has a degenerative condition which makes movement very difficult, but the staff at his local children’s hospice are able to use the donated Lifelites technology to encourage him to move through fun and play, helping him to stay active for as long as possible.
Alex had a brain tumour when he was six years old. After his surgery, he received extensive chemo and radio therapy. He spent three months in isolation when his stem cells were replaced and he initially recovered well. A year later, he relapsed and was given palliative diagnosis. But to the huge delight of his family and friends, his conditions very slowly improved again and is spreading joy with his lovely, bubbly personality!
A brain tumour at the age of six left Heavenly with a number of disabilities, but the equipment provided by Lifelites has opened up a whole new world to her.
Troy has Spinal Muscular Atrophy Type 2 which is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles. Troy needs to sit in a wheelchair and has difficulties moving his hands and arms. He often gets frustrated because of all the limitations he faces every day. But the Lifelites-donated Switches allowed him to bake cakes for his family, he is so proud of himself and now wants to bake all the time!
Seven year old Samuel has cerebral palsy and is a regular visitor to Acorns for the Three Counties in Worcester.
Brothers Thomas and Connor, aged 9 and 6, were born with life limiting complex congenital heart disease. Each has only half a heart.
Six year old Lois Russell who suffers from severe spastic quadriplegic cerebral palsy and epilepsy was one of the first to try out the technology when Lifelites visited Keech Hospice Care in Luton.
Our technology enhances the lives of thousands of terminally ill and disabled children and young people across the British Isles every day. One of those very special people is Craig.
William Young-Dagg is five years old and visits Butterwick Children’s Hospice in Durham.
Nine year old Megan Farrell from Middlesbrough has been attending Butterwick House for three years for short breaks so that her mum, dad and sister can take a little time off from their caring responsibilities.
Josh is a frequent visitor to Each Anglia Children’s Hospice in Cambridge and a very enthusiastic gamer.