This family are heartbroken after their little boy ‘went back in time’ overnight, and doctors still can’t explain why.
Ashfield mum Melissa Gibbons was ecstatic when she was due to give birth to her new baby – but had no idea of the complications her little boy might face.
Her toddler Kade, two, has a combination of epileptic encephalopathy and infantile dementia.
Melissa, 26, a mum-of-three, says it has been heartbreaking to watch Kade suffer such frequent seizures that he was taken him back to when he was a newborn.
She said: “It was hard watching him go back in time like that. He was born fine and up until four months old he was developing normally.
“Out of nowhere he started having fits and went back to a newborn overnight.
“He has infantile dementia because of the seizures, his brain has been that damaged it’s like he’s a baby and always will be.
“He has fits several times every hour, he’s nil-by-mouth, he can’t walk or sit unaided, he doesn’t communicate at all and, because of the type of epilepsy he’s got, he doesn’t respond to medication.
Kade’s condition is a suspected genetic condition, although the precise gene defect is unknown.
Melissa, of Herne Street, Sutton, said: “He’s got a good temper on him. He knows what he likes and what he doesn’t like. He doesn’t cope well with noise, he likes soft music and aquariums because they’re quite calming.
“We take him a lot to the Sealife Centre and the whole time we’re there he doesn’t fit at all.”
Even more difficult for the family to deal with is how little doctors can tell them.
Melissa said: He’s had substantial brain damage, but they don’t know what’s causing it.
“It’s life-limiting, but they don’t know to what extent. No one knows how he will progress.
“We went to the 100,000 Genome project and they did a full genetic test, because they think everything has happened due to a rare genetic disorder.
“However, there’s so little known about it – whatever has caused it has made it hard to control his symptoms, but he doesn’t respond to medications.”
Melissa has just given birth to her third child, Cassidy, but it is not yet known whether the four-week-old might develop the same genetic disorder.
Melissa said: “We don’t know what the future holds,
“We didn’t know children could get dementia, but there are these conditions out there so rare you may never see them. But they can happen to anybody.
“It’s hard because I have two other children and we don’t know if they’re affected or what it’ll mean for them later in life.”
The family said they would like to thank supporters who held a fundraising fun day.
Members of Empire Amateur Boxing Club, Legion Drive, Skegby raised £400 for much-needed support equipment to help Kade.
Natalie Abbs, Kade’s aunt, said: “My nephew is two years old, but can’t do anything for himself physically.
“He always has to be well supported, so they raised for him to have a specialist car seat which will be essential to getting him out and about and it and give him the support to ride safely in a car. It’ll be a necessity.”
Melissa said: “I’d like to thank them for how much effort they’ve put in. They tried to raise as much as they could because we do struggle and Kade has such specialist needs.”
Richard Wheldon, Empire leader, said: “We had youngsters paying a ‘pound-for-a-round’ with our champion amateur boxers.
“We had children and adults getting in, it was brilliant.
“We raised £800 and split in half with Kade and also the club is in desperate need of repair.
“Natalie told us about Kade’s condition and how he really needed help getting out and about, so we wanted to help out however we could.”
To help support Kade visit his Gofundme page.
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