Josh is a frequent visitor to Each Anglia Children’s Hospice in Cambridge and a very enthusiastic gamer.
Josh loves playing games on the touchscreen Tablet, donated to the hospice by Lifelites as part of a package of specialist technology. Josh has highly specialised needs and requires 24 hour care. However, when playing some of his favourite games on the Tablet – like ‘Lets go to Town’ and ‘Let’s go to the Seaside’- he can be completely calm and engrossed for up to 20 minutes.
“Josh loves this computer. He loves the games he can play on it and the fact that he can be in control. There is no way we could afford to buy it ourselves, so for him to have one at the hospice when he visits, is just wonderful.” Helen says: “He takes a lot of joy from it. It’s been fantastic.”
Josh was a normal toddler until he had his first epileptic fit at 26 months. Tests revealed a brain tumour.
“Up until that age, he was walking and speaking, in fact he was bilingual. He was exceeding milestones,” Helen remembers. “After the brain tumour was discovered, he lost speech and was mute for a time. He has got limited speech back now.”
Helen and her husband Gavin were initially told the tumour was malignant and Josh would not live long but a second doctor told them it was benign. It has been 9 years since then and there is still no agreed diagnosis for the tumour, except for the fact that it is inoperable and incurable.
“It is a long term degenerative condition:” Helen explains. “The tumour is atypical and doctors can’t fully agree on a diagnosis. He is an anomaly in every sense. There are no guidelines for him, he is a very unique individual.”
Now 11 years old, Josh is paralysed down his left side, has impaired vision and can suffer multiple seizures a day. The tumour is too big to be removed, though he has had surgery to try to help with his epilepsy and he underwent a gruelling two years of chemotherapy to try to halt his decline.
However, after an imaging scan in January this year, Helen and Gavin were told Josh only had 6 to 12 months to live.
“It has been a very difficult year for Josh. There is no treatment. We manage his symptoms and make his life as comfortable and as pleasant as possible. In our situation, it has been living with the constant unknown and the culmination of disabilities.”
When Josh has had a bad day of seizures, he can be floppy for a time afterwards, but even in this condition he can use the touch screen computer as one of the switches provided by Lifelites can be controlled very easily.
Helen said: “It works with him. We have nothing at home as child friendly as this. It is unique. Just see how much interaction he is getting from it. It allows him to use it independently.
He can get obsessed by computers, I think because through them he has some form of control. He can be the expert. It is vital for him to have this.”
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.
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.