Knowing your child is going to die doesn’t make it any easier when the end comes.
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Tarrawanna parents Lynda-Jane and Stephen Stone have been preparing for their daughter Imogen’s death for the past seven years, ever since she was diagnosed with late infantile Batten disease at the tender age of three.
On Sunday, October 8, the 10-year-old died peacefully at home after her long, and brave, battle with the rare and terrible disease.
The degenerative condition had slowly taken away Imogen’s ability to walk and talk, to see and eat – and about 12 months ago it took away her smile too.
It was a smile that had touched the heart of many, including the Duchess of Cambridge whom she met during her visit to Bear Cottage in Manly in 2014.
Imogen and her sisters Nataya and Amelie had dressed like princesses themselves for the occasion, donning beautiful dresses. During the royal visit, Kate leant over and gently patted Imogen while she talked to Mrs Stone about the condition.
It’s just one of many memories that the Stones – who also have a little boy Isaac – will hold dear after losing their daughter.
‘’As much as the journey has been tough, we’ve really had some happy times,’’ Mrs Stone told the Mercury.
‘’When we were given the diagnosis we suddenly realised how important it is to live in the moment, to not look too far ahead and dwell on what she was and what she used to be able to do.
‘’In doing that we’ve actually had intense joy and awareness and really seen the beauty and preciousness not just in Imogen, but all our children, and appreciated our precious moments with them.’’
Mrs Stone said her family drew their strength from Imogen: ‘’Batten disease took Imogen’s abilities but it also stripped her of those human qualities that aren’t as good – like want and greed.
‘’So she was without ego, she was so pure. We all called her our earth angel, and now she has her wings and will always be our heavenly angel.’’
The past year took its toll on Imogen, the last month in particular as her seizures worsened. ‘’We wondered ‘how long does this little girl have to suffer’,’’ Mrs Stone said. ‘’Now she’s at peace.’’
Imogen’s funeral will be held on Monday, October 16 at 11am at St John Vianney’s Catholic Church, Fairy Meadow.
‘’We are very proud as parents that she touched so many people in her short life,’’ Mrs Stone said.
‘’We know that seeing everyone there on Monday, and all their love, will make us happy that she touched so many. That she made a difference.’’
