THE mother of a two-year-old Brynmawr boy whose rare type of epilepsy could kill him at any time has said she must “take every day as it comes”.

Toddler Callum Sainsbury cannot walk or talk and suffers up to five seizures a day because of a rare form of epilepsy called Ohtohara syndrome.

The condition, which David Cameron’s son Ivan suffered from before he died in 2009, is caused by abnormalities in brain structure and has symptoms similar to cerebral palsy.

The condition cannot be cured and as many as half will die in infancy or childhood.

Wheelchair-bound Callum, who needs 24/7 care, first had seizures when he was just five-weeks-old but it was only in May last year that his mum Amy Sainsbury was told he has the rare syndrome.

“He started having around 19 seizures a day,” she said.

“At first I did not know what to think. My husband thought his life was limited in what he could do, but he also has a limited life span.

“It could kill him, he could die at any time. But we take each day as it comes, we have to really.

“I try not to think about it too much. Some kids don’t live to see two years but he’s nearly three now."

She added: “I’m thankful for every day. God picked me to have him, he chose me to have this very special boy.”

Doctors are unable to say for sure what caused Callum’s condition, although Mrs Sainsbury said she had suspected swine flu while she was pregnant which could have caused brain damage.

Little Callum is yet to spend a Christmas at home with the family, after being hospitalised for the past two. The first Christmas he was born in 2012 he suffered 45 seizures in a day.

The family have relied on Ty Hafan who has provided respite care for Mrs Sainsbury so she can spend time with her other three daughters aged seven, 12 and 13.

Ms Sainsbury said: “For the last year Ty Hafan have always been there. They have done a marvellous job.

“They look after Callum for us. We are always welcome down there.”

Now the mother-of-four is holding a fundraising evening for Ty Hafan at Nantyglo Rugby Club tonight (Fri) at 7pm and is hoping to raise upwards of £1,000. The Mayor and Mayoress are also due to be attending.