25 June 2024 , 11:22
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A schoolboy who experienced up to 10 seizures per day has been diagnosed with a rare brain disorder expected to stay with him for life.
Karen Donnelly has told how her son Junior started twitching on one side of his body after he was born in June 2018, but was initially told the distressing symptoms were nothing to worry about. The mum, 31, received a call from a midwife not long after returning home with the tot telling her to report to A&E, and following multiple tests, the baby boy was diagnosed with epilepsy.
Not only were the tests difficult to endure, but they were just the start of years of investigations into the youngster's health. Karen said doctors found "loads of things wrong" with his brain, and later diagnosed her son with another, much rarer condition.
Speaking to the Daily Record, she said she occasionally had to leave the room while Junior underwent the tests as she felt "horrendous". She said: "He was having seizures around ten 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."
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While the tot was prescribed medication to tackle the disorder following his initial diagnosis, his condition worsened as he got older. Medics eventually diagnosed him with a disorder named tubulopathy, an umbrella term that refers to symptoms caused by brain malformations.
Now nearly six, the boy can neither walk nor talk and is fed through a tube. He is completely reliant on his mum and dad, James Stevenson, with Karen saying his seizures are still not controlled, and that he has been to hospital "screaming with chronic pain". She said: "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."