Glasgow baby had '10 seizures a day' before heartbreaking rare brain disease diagnosis

A newborn baby who was having "10 seizures a day" has been diagnosed with a heartbreaking rare brain disorder that'll affect him for the rest of his life.

Junior was born at the Queen Elizabeth University Hospital on June 28, 2018, when his mum, Karen Donnelly noticed something wasn't right.

The mum-of-two says that he was "twitching" down one side of his little body which was horrendous for her to see, however, she was initially told that it was nothing to worry about.

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Days after being discharged from hospital, a midwife rang the 31-year-old and told her to take the tot to A&E immediately. Upon arrival, her little boy underwent numerous tests before medics discovered that he had epilepsy.

Karen, who moved from Paisley to the west end due to Junior's health, told Glasgow Live: "He was having seizures around 10 times a day. I knew it wasn’t right.

"I said (to medics) when I was pregnant I got told there was something wrong with the baby’s brain and asked if it could be that. They said they didn't think so.

"They did an MRI as a last resort and found that loads of things were wrong with his brain.

"It was horrendous to see him go through the tests, I had to leave the room because it was heartbreaking and I couldn’t watch them do that."

It took medics two years to officially diagnose Junior with tubulinopathy - a rare neurodevelopmental disorder associated with brain malformations as well as early-onset and intractable epilepsy.

Doctors prescribed Junior medication to help treat his epilepsy. Still, as he grew older the condition worsened and now at just five years old, he is on various medications with his epilepsy said to be 'uncontrollable'.

The wheelchair-bound boy does not walk or talk and has to be fed through a tube, completely reliant on mum Karen and dad James Stevenson.

He is also under the care of the neurology department at the Royal Hospital for Children in Glasgow.

Karen added: "As he grows, the epilepsy gets worse so over the years we have had to get more drugs. Some of them have been taken away and others added on.

"Still to this day, the seizures are not controlled. We have to dress, wash and do everything for him because he can’t do anything.

"He has been in hospital screaming with chronic pain for days on end. He will never have a normal life.

"He won’t be able to do anything by himself. If he does, he will backtrack at some point, we’ve been told.

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"It’s changed our life, we’ve had to move house. We’ve had to get a new car to suit Junior’s needs.

"I just wish we were told sooner so we could be more prepared."

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