Dementia heartbreak - ‘MY FIVE-YEAR-OLD FORGOT WHO I WAS'

Mum Emma’s worst nightmare came true when her little boy received a diagnosis

- CHARLOTTE NISBET

Emma Siddal thought there was something not quite right as she watched her toddler son Harley playing in the park. While the other kids happily played on the slides and swings, Harley was tearing around, acting more boisterous than usual.

Most parents would have put it down to his age, or just seen a young boy with plenty of energy to burn. But there were other things too.

Lately, Harley was always getting sick with colds and infections. He had a constant runny nose and his speech, rather than improving, began to deteriorate.

Emma and her husband Wayne Bond, 47, were beside themselves with worry, having no idea what was going on.

Then when Harley turned three, the family was hit with devastating news – their little boy had a rare condition called Sanfilippo syndrome, otherwise known as childhood dementia. Worst of all, it was life-limiting, with sufferers only expected to live between 10 and 20 years of age – and there was no cure.

For Emma and Wayne, the future they’d been looking forward to for their son evaporated in an instant. Each birthday that passed wouldn’t just be a celebration – it would be a time to wonder how many more precious years they would have left together as a family.

Stoically, they vowed to make every second count, but it wasn’t easy.