Family heartbroken as toddler who defied the odds to live is diagnosed with inoperable brain tumour at Leeds General Infirmary

A brave toddler whose mum was told she would not live "more than an hour" defied the odds to survive - but has now been diagnosed with an inoperable brain tumour.

Two-year-old Ellie May was born with a deadly tumour in her heart which led doctors urging mum Jade Rowland, 26, to make the heartbreaking decision to abort her baby.

But the single mum-of-three refused and said that as long as her baby was fighting to survive, she would fight for her too.

Sign up to our daily newsletter

The i newsletter cut through the noise

Doctors at Leeds General Infirmary found a tumour in Ellie's heart during a routine scan 22 weeks.

Ellie May has been diagnosed with an inoperable brain tumour

She was later diagnosed with a rare genetic condition called tuberous sclerosis.

The condition, which caused benign tumours to develop around the body, affects between one in 6,000 and one in 10,000 babies in the UK.

Specialists told Jane that Ellie would not ‘live more than an hour’ after her birth as she would struggle to breathe on her own and would also struggle to walk due to cognitive impairments.

But the tot defied the odds and was delivered two and a half weeks early by cesarean section on March 27, 2019 without any health complications.

Ellie May with devastated mum Jade Rowland, 26

The defiant baby was also able to learn to walk, despite Jade being told she would never be able to.

Ellie May was later diagnosed with West Syndrome, a very uncommon epileptic seizure disease found in infants, as she suffered six to eight seizures every day for six months.

But in February this year, she was dealt a crushing blow as an MRI scan found three tumours in her brain which would cause her to have developmental issues as she got older.

Devastated mum Jade was told by brain specialists that the tumours were inoperable as they were scattered around the brain and it would be too dangerous for surgery.

The benign tumours will cause little Ellie to suffer from learning disabilities, and doctors haven't been able to say if she will live to live a normal life span.

Jade, from Barnsley, said: “I’ll never forget when the doctors told me my Ellie May wouldn’t live more than an hour.

“It was completely devastating. It felt like she was being born to die.

“They told me to abort her but as long as she was fighting to survive I was going to fight for her.

“She’s such a fighter, and these past two years have been full of ups and downs but everything she has achieved has been extra special.

“We were told she wouldn’t survive. She did.

“We were told she wouldn’t walk. She did.

“She has constantly battled the odds and I’m so proud of my little girl.”

Jade described her heartache when she had her routine scans at 22 weeks at Leeds General Infirmary and was told the best course of action was to terminate her baby.

But holding her for the first time after she was born made her believe miracles could happen.

The carer said: “As we got closer they said we need to prepare for the worst.

“But when they told me I could take her home two days after she was born it was a strange feeling.

“When I held her for the first time, it made me think miracles could happen. I believe they come true because of her. When I look at her, the fact that she can walk.”

Sadly the joy was short lived, as Ellie May suffered nearly 10 seizures each day for six months and tests at Sheffield Children’s Hospital revealed the three tumours in her brain.

She has been given a terminal diagnosis as they will never be able to operate, but Jade has not been told how much time she has left with her daughter.

Jade said: “We don't know how fast this tumour is going to grow and it’s so difficult not knowing what the future holds or even what the next day will be like.

“She’s changed my life, she’s changed the way I look at things. The little things in life, moments with my family that are all matter.

“I have stopped caring about silly things and will never take anything for granted.”

Jade is now fundraising to improve Ellie May’s life for as long as they are together, and hopes to take her to Lapland for Christmas.

She said: “She will have many developmental issues and I don’t know how much time I have left with her so I want to make the most of it all.

“I am so proud of her and everything she’s done.

“And I just want her to experience as much as she can as long as she can.

“I love her to bits and I want to take her on trips around the world.”

Visit https://www.gofundme.com/f/elliemay-safe-space to donate.