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.
Lois’ mum Karen said: “Lois is a very clever and funny little girl locked in a body that doesn’t do as it is told. You can have a laugh and a joke with Lois and she really listens to everything people say to her. She knows exactly what she wants but she is unable to tell us, which as parents is just heart-breaking.
“Lois has developed her own basic way of communicating whereby she smiles if the answer to a question she is being asked is yes, and she looked down or looks away for no. We have been thinking about communication devices for a while now and have started to explore the possibility of Eyegaze technology with Lois. Although Lois’s vision is poor her sight loss is neurological not physical.
“This means that over the years she has learned to use her eyes to the best of her ability when simply looking at things as well as when choosing. We have tried a number of communication aids with Lois including the use of switches and auditory lists, both of which are good for developing Lois’s ability to choose but don’t allow her a great level of independence. So to have the technology available for Lois to use more independently to communicate is a dream come true for us and for her. It takes her a step towards having the voice she deserves.”
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.
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.
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.
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.