Noah has a rare genetic disorder known as H-ABC syndrome, which targets certain parts of his brain. It specifically affects his movement, and can cause stiffness, poor muscle tone and a lack of control. It is a degenerative condition, so will get gradually worse as he gets older. He receives hospice at home care from his local children’s hospice service, ellenor.
Many children’s hospices now have a hospice at home team which works in the community with families who prefer to receive care in the comfort of their own home, or who are unable to travel to the hospice itself. Lifelites works hard to ensure that all of the technology we provide is portable, so that it can be used by these hospice at home teams to reach as many children like Noah as possible. Noah has twice weekly visit from his team, who always take along his favourite piece of technology, an iPad.
Hannah Ives, assistant practitioner at ellenor said: “Noah absolutely loves the iPads. He enjoys listening to the music and watching the brightly coloured videos on it, and he’s able to watch it in whatever position he is comfortable in. We’re working on his head control at the moment so we put him on his tummy to encourage him to lift his head, which he can do for a short period of time. We also encourage him to play some of the specialist cause and effects games which Lifelites install on the iPads as we are trying to promote controlled movements. When he recognises that he can make something happen on the screen, it makes him want to do it again. It’s such a fun way of introducing gentle, controlled movement, which will benefit Noah as he gets older and his condition deteriorates.”
Another one of Noah’s favourite pieces of Lifelites technology is the Magic Carpet. He is able to play games on it with his older brother in a fun and safe way with the assistance of his carers. Hannah said: “We put the football game on and one of us holds Noah and helps him kick the ‘ball’ and his brother can kick it back. It’s incredible that despite his disability, Noah can still enjoy a game of football with his big brother. It’s a wonderful way for them to have fun and build their relationship.”
In September Lifelites will be visiting ellenor to donate a brand new package of technology. This brand new package will include an Eyegaze, which the staff can’t wait to use with Noah: “We’ve never had an Eyegaze before and we’re so excited to see how he reacts to it. It will really benefit him, particularly as his condition deteriorates and movement gets more difficult for him.”
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.
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.
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.