Our beautiful baby Jack was born without complications in February 2010. The first 6 months were a haze of the usual sleepless nights with a couple of minor complaints including reflux, wind and right-sided torticollis. Jack continued to be a happy, smiley baby and just a little slower than his peers to do things like sitting and crawling. We enjoyed seeing him grow to be a sweet, fun, gentle natured little boy.

As we celebrated Jack’s first birthday, we remember thinking that we’d got through that first year and that the only things which could hurt him now were external factors, which as his parents we could protect him from. Sadly just 19 days later we were proved wrong.

Jack became subdued one morning whilst playing and started being sick. On waking from his morning nap he went into focal seizure and I called 999 immediately. The paramedics and ambulance response was fantastic. They were unable to stop the seizure so we were taken to the local hospital where Jack was given a strong drug requiring him to be ventilated. He was transferred to the PICU at Great Ormond Street Hospital where Jack went through a barrage of tests for the next 48 hours. Raised liver lactate levels were found but no underlying cause. Jack was successfully removed from the ventilation and two days later with Jack eating and sleeping well, we were transferred back to the local hospital.

Over the next few days Jack started to have more minor seizures and absent spells but none of which triggered his heart or breathing monitors. An MRI scan and EEG didn’t appear to show any abnormalities. After 5 days of unexplained minor seizures we were back to GOSH and the Neurology ward.  More tests were run and the MRI result analysed further. This showed that Jack had actually had a stroke, causing the seizures. The consultant suspected that Jack had Alpers, a life limiting mitochondrial depletion disorder. This effectively means that the cells in Jack’s brain weren’t producing enough energy and caused the stroke.  We were told that most Alpers children do not usually live beyond the age of 10 and that he was likely to have more strokes and slowly deteriorate as his number of mitochondria depleted.

We then faced a 21 day wait for the diagnosis of this variant of mitochondrial disease to be confirmed. Over the following week Jack started to improve and we desperately hoped that the diagnosis was wrong.  After a 12 day stay at GOSH and with Jack stable on anti-seizure medicine, we were sent back to our local hospital to be discharged home whilst we waited for the results. Sadly, we never got home. Just the next day, Jack deteriorated again and went back into a seizure they could not stop. Just 36 hours after leaving we were back at GOSH PICU with Jack back in a coma. The following day brought the early test results. Alpers was confirmed.

Over the next week the doctors attempted to regulate the irregular brain activity but unfortunately this couldn’t be achieved. The coma had also caused other side effects to Jack’s key organs. On 29th March 2011, less than 5 weeks after becoming ill, Jack was taken off ventilation and passed away peacefully in our arms.

We love you and miss you always Jack – Alison & Steve Bennett.

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