A six-year-old boy has died two weeks before Christmas – leaving his family devastated and heartbroken.

Callum Sainsbury died after a battle against a rare form of epilepsy on Tuesday.

Now his family are preparing for Christmas without the "cheeky" and "charming" lad.

Tributes have been pouring in for the huge rugby fan, Wales Online reported.

Callum, from Brynmawr, south Wales, was diagnosed with Ohtahara syndrome as a baby after he began having up to 19 seizures a day.

Those with the condition are particularly susceptible to repeated chest infections.

His family have described how he defied the odds, and was supported by his sisters Katelyn and Kelcea.

Callum’s mum Aime said: "Callum was so cheeky, he had me wrapped around his little finger if he wanted something,

"He was just so charming – there’s so much to say about him.

"He loved rugby and he loved Jurassic World, his favourite was the raptor Blue."

Throughout this year, friends and family had been raising money for Callum to have the perfect Christmas after he had spent December 25 in hospital for the last three years.

In November, family friend Sasha Wilks also organised for the Pen-Y-Cwm pupil to meet the Wales rugby squad during their autumn campaign.

Since Callum’s death, fundraising has now begun to support his family with the cost of his funeral.

Amie, 35, said: "For the last five and a half weeks, Callum didn’t have one fit.

"He went to Ty Hafan last Thursday evening and he was fine. On the night he was on oxygen and we couldn’t get him off it.

"On the Sunday he slept all the day through and didn’t wake up at all. We wanted to make him comfortable.

"He was in a place that was calm and they really respected our wishes.

"I told all the staff they could come and say their goodbyes and they did."


Since Callum’s death on Tuesday, his family have been overwhelmed by messages of love and support from across the UK – including from Diversity star Ashley Banjo.

Aime said: "We got hold of Diversity, as we had met them before, to tell them and Ashley Banjo said we were a lovely family and that he was glad he had met Callum.

"I can’t say enough to thank people for what they have done for me and my daughters and Paul.

"The support has been immense. The girls are holding it together but deep down I know it’s bothering them really badly.

"They were always by his side and loved him so much."

In a video thanking friends for their support, Amie added: "Our boy is really going to be missed. Callum touched everyone’s heart.

"We will never ever forget him, we will talk of him every day and we love him to bits.

"We are having to deal with this just before Christmas but he is safe, he is not in pain anymore, he is not suffering any more.

"It’s so hard to know that he’s gone and he will never be there with us but he is with us – he’s in our hearts.

"I can’t thank everyone enough for what you are doing right now. It’s helping us so much."

To contribute to Callum’s funeral costs, follow this link.

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