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.
Heavenly wasn’t born disabled, but was diagnosed with an ependymoma brain tumour at the age of six. During the operation which ultimately saved her life, she suffered a stroke which robbed her of her speech and the use of her limbs and eyesight on her right side. After winning her fight with cancer she was diagnosed with a rare condition called poiklothermia, which means that she cannot maintain a normal body temperature and lives with hypothermia every day. Some days her temperature can be as low as 18°C.
Heavenly uses the Lifelites equipment at Acorns in the Black Country, but particularly likes the iPads. Her mum Kelly told us about the impact they have had on her: “The iPad has made such a difference to Heavenly’s life. I could go on forever about how important this tech is to her; the whole family can use it communicate and play with her.
“Heavenly is unable to speak, and over the years she has used a range of different communication tools but once she started using the iPad suddenly she was a completely different child. Also, due to her condition she can’t go out a lot and isn’t currently able to attend school, but she can use the iPad to stay in touch with her friends, keep up with her education and play games with the whole family. It has given her so much confidence.”
Despite going through so much, Heavenly, who is now 12 years old, is able to use the Lifelites iPads and other pieces of Lifelites equipment to have fun, be creative, communicate and control something for herself.
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!
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.
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John Donoghue is a dedicated Lifelites Benefactor. He shared with us his very moving personal story about his daughter's health and the reason he decided to become a benefactor, and make a regular monthly gift to Lifelites.
Our Patrons support our vision, mission and values and give all of their time for free. Their contribution and support is highly valued.
Lifelites aims to harness the power of technology by donating a wide variety of assistive and inclusive equipment to enhance the lives of life-limited and disabled children using hospice services.
For these children with complex cognitive and physical impairments, this technology is quite simply magical. It gives them opportunities they wouldn’t otherwise have to join in with the world around them, irrespective of their disabilities.
Providing these opportunities is only possible because of the donations that Lifelites receives.
We have two new additions to our magical technology package! Click below to learn more about the Tilt Table and the PODs Sensory Tent!