She'll never sneak home late at night, walk down the aisle or have children... the life that we envisaged has now gone

Parents of 'childhood dementia' tot Leni on their daily heartbreak

- BY EMMA MACKENZIE

LENI Forrester looks like sunshine personified - a joyful two-year-old obsessed with her dolls, smiling and giggling with her doting parents.

But for mum Emily and dad Gus, every day is an emotional and physical struggle with the realties of Sanfilippo syndrome.

The rare genetic condition, often described as childhood dementia, slowly robs a child of the ability to walk, talk and eat.

And worst of all, it is terminal, with an average life expectancy in the mid to late teens.

Emily, 33, says: "Everything that we have envisaged like Gus walking her down the aisle, having grandchildren, her going out late at night and sneaking back in...

"All of these things that you envisage for your life together and your family - it's not just the child impacted by that, it's everyone." Now the mum is trying to raise funds for treatment before Leni begins to regress.

EMOTIONAL

The family's plight has moved former Little Mix star Jesy Nelson, whose twins, Ocean and Story, were born with a rare genetic condition spinal muscular atrophy, last year.

Jesy, 34, invited Emily and Leni to a Mother's Day photoshoot to help raise awareness of similar rare conditions.

"Meeting Leni and 1 her mum, Emily, 1 really stayed with me," the singer said.

"Leni is such a beautiful, happy little girl, and you can just feel how loved she is.

"Spending time with them was incredibly emotional, because it's so hard to understand how something like this can happen to such a young child.

"Emily is amazing, so strong and so devoted, but no parent should have to fight this hard just to get their child the treatment they need. It's heartbreaking.