*** Update ***
We’d like to say a huge thank you to everyone who donated to James’ appeal. He’s now met his fundraising target for a bubble wall!
On behalf of James, his family and from us at Children Today we want to say a massive thank you to those who shared and donated. You’ve played a huge part in changing this little boy’s life for the better.
The parents of 6-year-old James Smith, from Thurnby, who his mum describes as “very loving and sociable” are desperate for a bubble wall to enable him to experience one of the few forms of play he can participate in at home.
Children Today Charitable Trust, has pledged to cover more than half the cost of the equipment and has launched a fundraising appeal on behalf of the family to raise the additional £490 needed!
James’ mum, Rachael Smith explains how their “world was turned upside down” after James contracted meningoencephalitis at just five months old and again at 11 months old.
Meningoencephalitis is a very serious neurological condition, which resembles both meningitis and encephalitis – inflammation of the meninges and inflammation of the brain tissues respectively.
It is unknown how James contracted meningoencephalitis. However, the condition is often linked to common bacterial and viral infections such as the herpes virus, which causes cold sores, and Streptococcus pneumonia, a bacteria commonly found in the nose and throat.
“It was such a scary time for our family. James had been a healthy, happy little baby and then everything changed overnight. We nearly lost him twice and he spent both his first Christmas and first birthday in intensive care.
“We felt so lucky, when James was born. I have kidney disease, which meant there were added health risks being pregnant, so when he arrived healthy, albeit four weeks early, we were so relieved. Then when he got meningoencephalitis, it felt so cruel. We felt like he’d been robbed. One day we were just a ‘normal’ family and that all changed suddenly.”
The scarring to James’ brain caused by the meningoencephalitis has left him with very complex needs. As well as being partially sighted, he has a rare type of epilepsy called Lennox-Gastaut syndrome and severe global development delay.
“James can have up to 17 seizures a day. Since he started having ‘drop attacks’ I’ve lost count of the number of times he’s had to have his lips, chin and eyebrows stitched and glued back together, and he’s broken his nose four times. So, at the moment he spends most of his time in a wheelchair as that’s the only way to keep him safe.
“He also has laboured breathing episodes, which have lasted up to twelve minutes. His lips go blue and it’s absolutely terrifying. He’s been blue lighted to A&E several times and because of the severity of his epilepsy he is at high risk of sudden unexpected death in Epilepsy – SUDEP.
“As hard as it is coping with James’ medical needs he brings so much joy to us and his baby sister, Emily. He’s such an affectionate little boy, he loves his cuddles and adores Emily. He’s not a fan of loud noises but when Emily cries out or screams he just laughs!
“James is such a cheeky little monkey, who loves to play and explore, but at home there’s very little he can play with safely that gives him the sensory stimulation he needs.”
James’ consultant has advised that sensory stimulation is vital and a bubble wall would help him to develop his hand-eye coordination to stimulate visual responses.
“James absolutely loves the multi-sensory room at school, his face lights up when he’s there. He particularly enjoys and engages with the vibrations of the bubble tubes. It would make such a difference having a bubble wall at home for him as it would really help with his development and would also help to calm him down after a bad seizure.
“The bubble wall is something that he can use whilst in his wheelchair, so I’ll have peace of mind that he’s safe but not completely bored.”
To make a donation to help fund James’ bubble wall visit his online fundraising page.
Any funds raised over and above what is needed to provide this equipment will go towards helping fund vitally important equipment for other vulnerable children and young people living with a disability.