Cole (age two) was born on 26th July 2012, a healthy baby.
“When Cole was just over two months old, he jerked as he lay feeding in my arms. It looked like he had got a fright. Both of his hands came up to his chin and his eyes rolled back. It only lasted for a few seconds, but my gut said ‘that's not right’.
“The next day the jerking was happening every hour, in clusters of ten. I grabbed David's phone and recorded this jerking. When we showed the video to our GP, he referred us to a paediatrician.”
Cole quickly underwent a series of tests
“We were heart-broken to be told that he had focal epilepsy in his left temporal lobe. His diagnosis was followed by months and years of tests, travelling to hospitals, and trying different epilepsy treatments. During this period of time, Cole’s consultants tried every medication they could, but none worked to control his seizures. The longest period of seizure freedom Cole had lasted just 21 days in November 2013.
“As a family, we watched him have seizure after seizure. His body was left exhausted and sore. Cole was unable to have a proper sleep, he was up every few hours screaming and crying. We saw his development freeze or slow down, and his mood, behaviour and social skills increasingly worsen over his first two years of life.
“During all this time, our oldest son Dylan (who is now five) was amazing, and a constant joy to not only me and his dad, but to Cole too. Dylan has always been a fantastic big brother to Cole. He always looked after his little brother, and would alert me if Cole had a seizure. Dylan had to grow up a lot quicker than most five year olds, but he just got on with it. He never moaned when he was passed about our family while we spent days in hospital, or about the sleepless nights with Coles screaming. Dylan is such a good boy.
“After two years of tests, heartache, and the constant unknown...we were told that Cole was now ready for epilepsy brain surgery. We were told his only option for a seizure free life was to have a lesionectomy on his left temporal lobe. This operation would be carried out in Edinburgh Sick Kids. Once the decision to have surgery was made, we were given the date of the operation really quickly.
The surgeons spoke to us about all of the possible risks, and made sure that we were fully aware of everything that would and could happen. One of the risks that really concerned us was that Cole might lose his speech.”
In November 2014, Cole had brain surgery
“He went away with the surgeons at 8.30am and at 4pm we got the call to say Cole was out of surgery, and to go get our boy. We were so worried, but as we walked to go get him, I could hear him shouting for us “Mum….Dad!” The tears poured down my face with relief. He was out of surgery, he was awake and he could speak.
“Over seven days and nights, the amazing staff looked after Cole, David and I. By day four, Cole was up on his feet, and on day five he held our hands as he walked up and down the ward. Our son Cole, the superstar.
“Cole has only had one seizure since his surgery. Although we still have some way to go, the reduction in his seizures allows us to focus on everything else. We will continue to keep working to give our boy the best chance in life. But this would not have been possible without the amazing family and friends we have around us, and of course, the fantastic medical team around Cole.”
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