James gets to play – all thanks to public help
BUBBLE MACHINE WILL HELP WITH BOY’S COORDINATION AND EPILEPSY
THE family of a boy with a rare type of epilepsy say they have been overwhelmed by the public’s support for a fund-raising appeal.
Six-year-old James Smith, from Thurnby, is blind. His family wanted to get him a bubble tube to enable him to experience one of the few forms of play he can participate in at home.
Mum Rachael said: “James contracted meningoencephalitis twice as an infant, which has left him with very complex needs.
“The scarring to his brain caused by the meningoencephalitis resulted in severe global development delay and visual impairment.
“He also has a rare type of epilepsy called Lennox-Gastaut syndrome, which can cause up to 17 seizures a day and drop attacks, so there’s always the worry of him injuring himself.
“James is such a loving and sociable little boy. He loves to play and explore, but there’s very little he can actually play with safely due to his condition.
“At school, James has access to multisensory room, but it can be very difficult to keep him entertained and stimulated at home.”
A consultant advised James’s parents that sensory stimulation is vital and a bubble tube would help him to develop his hand-eye coordination to stimulate visual responses.
However, at a cost of almost £1,000 it was too expensive for the family, so they reached out to Children Today Charitable Trust.
Children Today pledged to cover more than half the cost of the equipment and helped the family launch an appeal for the remainder.
The money was raised in under a week, thanks to donations from individuals and a significant donation from a Leicester charity, Global Poverty Relief.
Rachael said: “We can’t thank Children Today and everyone who donated enough for their generosity.
“James absolutely loves his bubble tube. He loves the sensation of the vibrations and the changing colours.
“I think orange seems to be his favourite, as it’s bright. The bubble tube is really helping with his development and also helps to calm him down after a bad seizure.
“At the moment it’s in his bedroom, but we’ve been blessed with some funding to create a safe sensory space for James, and we just can’t wait for him to have a safe space where he can really enjoy the bubble tube in all its glory.”