Doctors told brave mum her toddler, 2, wouldn’t live ‘more than one hour’ after she was born

A 26-year-old mum from Barnsley has vowed to provide the best quality of life for her toddler despite not knowing how much time she has left.

Monday, 1st March 2021, 12:50 pm

Jade Rowland said two-year-old Ellie May has suffered from tuberous sclerosis with tumours in her heart and brain since birth, and later from West Syndrome and severe epilepsy as she grew older.

The family were told that Ellie May, who is the youngest of three siblings, would only live more than one hour after she was born but she defied the odds and soldiered on despite the illnesses.

But last week, Jade said she received the most devastating news when the brain specialist from Sheffield Children's Hospital that Ellie May's brain tumours were inoperable, which has given her a terminal diagnosis.

Sign up to our daily newsletter

The i newsletter cut through the noise

Ellie May has suffered from tuberous sclerosis with tumours in her heart and brain since birth, and later from West Syndrome and severe epilepsy.

Jade said she found out that she had complications in her pregnancy when she was 22 weeks pregnant and she was told to abort the pregnancy.

"I said no. After her birth, she got under the machine to feed her and let her breathe. But after a while, she breathed on her own although she had the tumour.

"We were also told that she'd never walk, but she started walking. But last week, the hospital said they couldn't remove the brain tumour so we'd just want to provide the best quality of life that she can have.

"It's hard to explain how I felt," she said, adding that her sole focus now is to do whatever they could to make her as happy and comfortable as possible.

Ellie May enjoys climbing, says her mum, Jade Rowland.

Jade, who has fundraised regularly for the epilepsy ward at the Barnsley hospital and for Ellie May to get a sensory room said they are now focusing on raising funds for her child.

The sensory room, she said, needs electrical work and kitting it out with the sensory equipment.

So far, she has raised close to £800 on her GoFundMe page, but the campaign has been slow, said Jade.

"Recently it has picked up after loads of local shops helping. It's just a matter of getting the word out."

Asked whether she knew how much time Ellie May has left, she said there was no definite time frame given by the doctors.

"We don't know how fast this tumour is going to grow. The most upsetting part is not knowing.

"So that's why we are fundraising for her to get her the life experience that she might not be able to do in a couple of years' time."

On her GoFundMe page, Jade said: “My aim is to make the best memories for Ellie May now and hopefully with any funds left over take trips and who knows maybe one of a lifetime.”

Asked about these trips, Jade said when it is safe to do so, she would bring Ellie May and her family to see live dolphines in Turkey and celebrating Christmas in Lapland, Finland.

"She enjoys climbing – she’s cheeky, smiling at you all the time.

"Me and my mum would love to spend Christmas with her in Lapland, something we’d want to do for her, so she can experience different things.”

To fundraise for Ellie May and support Jade's campaign, please go here.

In these confusing and worrying times, local journalism is more vital than ever. Thanks to everyone who helps us ask the questions that matter by taking out a digital subscription or buying a paper. We stand together. Nancy Fielder, editor.