A FUNDRAISER has been launched in support of a disabled Bewdley boy who suffers “over 200 seizures a day.”
Nathan Haslam, aged 10, was born with a rare genetic condition called Tuberous Sclerosis Complex or TSC type2.
When he was seven months old he was rushed to hospital suffering from prolonged tonic-clonic seizures.
Four days later his parents Jonathan and Emma, who are full-time carers for their son who they call 'Nay Nay,' were given the devastating news that he had TSC.
Jonathan, aged 41, said: “It’s absolutely exhausting. It’s so stressful to watch your son having seizures every day and then there’s nothing you can do about it.
“It’s constant all through the night. He doesn’t get a rest.
“It’s just horrendous to watch".
Three years ago, Nathan, who is severely autistic, had to undergo major brain surgery called corpus callosotomy to separate the two halves of his brain to try and help control the seizures.
But the operation failed and all of his seizures have returned worse than before.
Due to his needs, his parents are struggling to give Nathan the help and care he needs daily.
Carers Rachel Birch and Hayley Mitchell also look after Nathan on Tuesdays and every other Saturday.
The family are in need of a downstairs wet room and bedroom. Jonathan previously slipped and broke his foot on the stairs trying to get Nathan upstairs.
The family are entitled to a Disabled Facilities Grant, but the funding doesn't cover the quotes for the extension work.
A GoFundMe page has been set up to help Nathan and his family. It's already raised hundreds of pounds.
Mum Emma, aged 45, added: “We are just on high alert for Nathan at all times.
“You can’t rest because you have to keep an eye on the seizures.
“It’s very challenging. He’s got the most amazing personality.
“Even though he goes through so much he’s always smiling.
“I call him my hero. He still finds joy in the simplest of things”.
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