Royal meeting for a Tarrawanna princess

Imogen Stone, who has Batten disease, and her older sister Nataya will look like little princesses for their brush with royalty. Pictures: SYLVIA LIBER

Imogen Stone, who has Batten disease, and her older sister Nataya will look like little princesses for their brush with royalty. Pictures: SYLVIA LIBER

A degenerative disease has taken Imogen Stone's speech and sight but mother Lynda-Jane says the Duke and Duchess of Cambridge are sure to be won over by the seven-year-old's winning smile.

The Tarrawanna schoolgirl and her family will be at Bear Cottage in Manly on Good Friday when Prince William and Kate - and maybe baby George - pay a visit as part of their royal tour.

All the little girls staying at the children's hospice - including Imogen and her sisters Nataya, 9, and Amelie, 1, will look like princesses themselves with Sydney-based brand Tutu Du Monde providing gorgeous tutus for the meet and greet.

Mrs Stone and her husband Stephen take their girls, and brother Isaac, 3, to Bear Cottage twice a year to get some much-needed respite. This year's week-long stay will be the most memorable yet.

Nataya Stone reaches across to kiss her little sister Imogen.

Nataya Stone reaches across to kiss her little sister Imogen.

"When Will and Kate got married my family all got together to watch the wedding on television," Mrs Stone said. "Now we get to see them in the flesh.

"It's an experience that not many people get, and it is beautiful that we will all be together - it's a memory we will treasure."

Memories are a precious thing for the Stones, who have watched their beautiful daughter lose her speech, mobility and sight since being diagnosed with late infantile Batten disease at age three. The neurodegenerative disease is fatal, with a life expectancy of between eight and 12 years.

"Imogen was a normal, happy little girl who loved playing, singing and dancing - then on her third birthday she had a seizure," Mrs Stone said.

"Initially specialists thought she had epilepsy but by the time she was 4½ she was losing her words and getting unsteady on her feet and she was diagnosed with Battens.

"Now she cannot walk or talk, she is fed through a tube, and halfway through last year she lost her eyesight. She's getting worsening seizures and chest problems - which is going to be what takes her life."

The Stones cope with such an unbearable prognosis thanks to a great support network - and thanks to their little girl.

"When we were first given her diagnosis we went through enormous grief and we continue to grieve," Mrs Stone said.

"But day to day we still find so much joy ..."

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