Becky and George smile through tears as they remember their beautiful baby boy Grayson Brittain-McMitchell and some of the wonderful memories they shared – but also reveal the devastating day when everything changed.
Becky said: “Grayson was just perfect. You could just watch him while he was sleeping, or when he was playing. You could just watch him for hours and you’d never get bored. Ever.
“He was our miracle, we tried to conceive for six years. We had a miscarriage at the beginning followed by years of infertility and failed IVF at the end, then six months later I fell pregnant naturally.
“Then one day, while we were changing his nappy, he just suddenly stopped breathing.”
By the time the ambulance arrived dad George had given rescue breaths and little Grayson seemed to be back to normal. The family were still taken straight to A&E, and that’s the day Grayson’s frightening seizures began.
Becky said: “He went from being a normal, healthy baby in the morning to just having seizure after seizure after seizure. And they weren’t typical seizures, they were the kind where he would stop breathing.”
Frightening medical tests followed to determine the cause of the seizures before Becky and George were finally given devastating news.
The new parents were told their precious son had a very rare condition that affects only one in 40 million called Vanishing White Matter Disease.
Grayson was given only a short time to live – ‘days, weeks or months if he was lucky’.
Vanishing White Matter Disease is a genetic brain disease that affects the nervous system for which there is currently no cure. It is usually diagnosed in very young children, but can occur in adulthood, and is characterised by the degeneration of white matter in the brain.