Bonnie was born on the 29th of July 2014 after a typical pregnancy but it became clear soon after she arrived that something wasn't quite right. She began having 'episodes' where she would become floppy and turn very pale so she was taken to NICU where she remained for the next 17 days. During this time, after ultrasound, CT, MRI scans and blood tests it was discovered that she had severe abnormalities in her brain and very high lactic acid levels in her blood. She was given some medicine to bring down the lactic acid levels, which stopped the 'episodes' (that we now believe to be seizures) and referred to Great Ormond Street hospital. At 3 months old we rushed her back to hospital as she stopped breathing several times, doctors at basildon hospital couldn't figure out what was going on, it was a very scary time and several times we thought we would lose her. Eventually she was transferred over to GOSH where she had an EEG, this showed that she was suffering apnea seizures. It was during this stay that we were told that they had come up with a diagnosis. We were taken into a side room and told the soul crushing news that she had a life limiting condition called pyruvate dehydrogenase complex defiency. It's a rare metabolic condition that prevents her body from converting carbohydrates into energy and this is why her brain didn't develop properly in utero. They explained that while there is no cure there are treatments that may help Bonnie to have a better quality if life, mainly the ketogenic diet. She started the diet straight away and thankfully it has helped her energy levels enormously and medication has helped her with the seizures. She was eventually discharged with oxygen to give her after a seizure to help her recover and a feeding tube as she struggled with bottles. She has since been fairly stable although she is severely delayed both mentally and physically, she has low muscle tone so is unable to sit unaided, she has very poor vision and is completely tube fed. Despite this she is a beautiful, joyful little girl who loves cuddles, tickles, noise, swimming and sensory play.