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.
Craig was born with a rare genetic condition called Neurofibromatosis. The condition, which is a result of a genetic mutation, can cause a number of medical complications. These medical complications have been so severe for Craig that he has come very close to losing his life to them on several occasions.
Although he used to be as talkative and mischievous as any other child and was able to walk and talk, Craig is now confined to a wheelchair, unable to communicate and requires round the clock care from his parents.
Geoff tells me that Craig refuses to be held back by his condition and found his life completely transformed when he was given an iPad. The iPad has an app which enables Craig to communicate, ProLoQuo2Go. The app is pre-programmed with over 10,000 words and is easily adaptable to the user’s preference and caters for a wide range of fine-motor, visual and cognitive skills.
Craig has a section on the app called ‘Craig’s corny jokes,’ and even has a section for insults. At the press of a button it says ‘My Dad is fat bacon pig.’ Geoff says “I don’t care what he calls me, as long as he’s still here to call me it.”
As well as using the iPad for fun and games, Craig can also use it to tell his carers when he is in pain and how bad it is, which can be life-saving.
Self-confessed technophobe Geoff said: “The only time you see Craig stressed is when his battery runs out. The iPad is everything to him. It’s his world. It’s his lifeline.”
Since the age of 17 Craig and his family have regularly visited Martin House children’s hospice in Yorkshire, which is just one of the services that Lifelites provides technology for.
Martin House was the first hospice to receive iPad packages from Lifelites, and in 2016 we donated even more, all loaded with specialist apps including of course, ProLoQuo2Go. They cost £700 each, but Craig’s story alone is enough to prove that they can change lives, so we think they’re worth their weight in gold.
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.
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.
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.