He suffers up to 20 epileptic fits a day, is fed through a stomach tube and requires 24-hour, seven day a week care.
But seven-year-old George Kirwan is mainly looked after by his single mum Melanie Kirwan (49) at their home in Market Harborough.
Now a charity has stepped into help George, who suffers from the very rare Dravet Syndrome.
The charity React (Rapid Effective Assistance for Children with potentially Terminal Illness) has supplied special sensory toys for the chronically ill seven-year-old.
George, who is also autistic and cannot speak, can now play with a Giant Maxi Bubble Tube and a Wall Mounted Infinity and Beyond Panel which encourage his development.
Mum Melanie said: “He has to be watched all the time because of the seizures, and he has lots of health problems - he nearly died in 2010 from pneumonia.
“He also sleeps very little, which means I sleep very little, because when he’s awake he wants me to be awake.
“But he’s such a lovely, affectionate boy. He doesn’t ask for much; he just wants loving and caring and to have a laugh with you. He’s a good boy.”
Melanie said she couldn’t cope without help from her parents, who also live in Market Harborough.
There is also respite care from Rainbows Children’s Hospice in Loughborough and from specially-trained nurses.
Melanie said: “I sometimes feel I’m a one-woman hospital, and it’s difficult to keep on top of everything, whether it’s the feeding or all the medication, or just getting some sleep.
“George won’t play with ordinary toys, but these sensory toys that React have sent are brilliant.”
React provides a wide range of equipment including specialist wheelchairs, beds, baths, and mobility aids.
Find out more at www.reactcharity.org