Portsmouth mother sets up fundraiser to find answers for 'puzzle' youngster with undiagnosed brain condition that 'lights up any room he goes in'

A MUM is desperately seeking help to work out which condition is affecting her young son’s brain.

Paula Burns’ two-year-old son, Ezekiel, has an undiagnosed disease where he loses cognitive skills and has seizures where he stops breathing – requiring 24-hour care.

The single mum of three said she has been told her child’s condition is a ‘puzzle’.

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A Portsmouth mum has set up a fundraiser for her two-year-old baby with an undiagnosed brain condition, hoping to find some answers. Pictured from L to R: Paula Burns, Ezekiel, two, Aria, nine, and Ezra, five. Picture: Paula Burns.

A GoFundMe fundraiser is raising money for a trip to America to see if Ezekiel’s condition can be diagnosed.

If that is unsuccessful, funding will be used to purchase equipment and maintain his quality of life.

Ms Burns, 29, said several MRI scans over a year, including one in Oxford in February, have been fruitless.

She told The News: ‘I’ve been told he’s had the golden nugget of NHS treatment, and they’ve done as many tests as they can for him.

Pictured from L to R: Paula Burns, Ezra, five, Aria, nine, and Ezekiel, two. Picture: Paula Burns.

‘He is still undiagnosed. They class him as a puzzle.

‘As the specialists don’t know what they are dealing with, it’s hard for them to know where they can go from here.

‘That’s why it’s important to do the fundraiser to try and get us to America, to see if we can save him.’

Ezekiel has surpassed his life expectancy, despite his disease and being immobile.

Scans have shown damage is being caused to white matter in his brain – causing a myriad of afflictions.

Ms Burns said Ezekiel can stop breathing without warning and his legs wrap around themselves and lock in spasms.

Skills such as sitting or standing with equipment can be lost in moments.

She added: ‘You don’t know if he’s going to have a good day or a bad day.

‘As he’s getting older, he’s having more bad nights than good.

‘I watch him feel frustrated, as he knows he can do things, but his body doesn’t let him.’

Ms Burns said she feels alone in caring for Ezekiel, alongside Aria, nine, and Ezra, five.

The family lack alarms, warning them when he stops breathing, and Ezekiel is under the age for the NHS to provide carers.

Aria and Ezra both play a part in looking after their brother – joining in with sensory play and other jobs.

‘It’s heart-breaking, because they’ve had to grow up quickly when they should be kids’, said Ms Burns, adding, ‘they love Ezekiel to pieces.’

Both children receive help from the Rainbow Trust – a charity supporting families with terminally ill children.

They were chosen as ambassadors for the charity’s upcoming car fest event, due to their commitment.

‘I couldn’t ask for better kids’, Ms Burns said.

‘We’re going through hell, and yet, they’re still amazing.’

Jess Warren, a close family friend, said Ezekiel’s condition potentially matches leukodystrophy.

She said clinical trials are taking place in America, which could potentially help him, and the Burns’ family have remained resolute.

Ms Warren added: ‘It has shocked me how strong the family have been. A lot of people are in awe of them.’

Ms Burns remains determined. She said: ‘He is the happiest boy and even in such pain, he lights up any room he goes in.

‘I’m someone that’s never asked for help, so asking for this to try and save my boy is stressful.

‘All I care about is knowing that he will be ok.’

The fundraiser is at https://tinyurl.com/2p873b2v