The mother of a two-year-old girl diagnosed with a form of childhood dementia has said she wants greater recognition of the term after their shock at what they felt was a lack of awareness.

Emily's daughter, Leni, was diagnosed with Sanfilippo Syndrome last year - a rare, genetic disorder which leads to severe cognitive decline and a loss of motor skills.

Emily, from Sevenoaks in Kent, said: "It is catastrophic, I can't think of a worse diagnosis for your child, or for anyone, and yet no-one knows about it."

The Department of Health and Social Care (DHSC) said it was "working hard to find new ways to slow down the progress of dementia, speed up diagnosis and improve our understanding of the disease".

Sanfilippo Syndrome is one of more than 140 conditions that can cause childhood dementia - a term that brings individually quite rare conditions under one umbrella.

Emily said: "Grouping them together gives us a much more powerful voice and the ability to make significant change.

"The goal is to make real change. It's not to get one child access to treatment, it's to get real change made at government level that then benefits nationwide."

Sanfilippo Syndrome progressively damages the brain, causing children to lose skills they have already learnt, including speech and mobility.

The condition is caused when people are low in, or missing, certain enzymes in the body. Many children affected do not reach adulthood.

According to the MPS Society, which supports those with diseases like Sanfilippo, "there is currently treatment for symptoms as they arise, but no cure for the underlying disease".

Emily said: "At the moment, Leni is like any other two-year-old. She is doing really well which is obviously amazing, but it also makes it really, really painful because we have so much to lose."

Emily said regression usually starts at about three years-old.

"So it could be any day now," she said.

The family has released a book called Saving Leni which tells their daughter's story.

Sophie Thomas, Interim chief executive of The MPS Society said: "Ultimately, recognition would help professionals understand the condition, it would improve access to support, encourage investment in research and make sure childhood dementia is considered in policy and service planning."

A DHSC spokesperson said: "Neurodegenerative conditions such as Sanfilippo syndrome have a devastating impact and our thoughts are with Leni and her family.

"We are making sure patients with rare diseases get a definite diagnosis faster, while improving access to specialist care, treatment and drugs.

"At the same time we are working hard to find new ways to slow down the progress of dementia, speed up diagnosis and improve our understanding of the disease."

Meanwhile, for Leni, there is a possibility of taking part in a clinical trial later this year.

Emily said: "For the first time since Leni's diagnosis we actually have some hope for the future.

"We have received such a huge amount of support and generosity from people and there is now real hope of Leni accessing a clinical trial that could change her life."

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