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Allegra Patty was a gorgeous, bright and cheeky little girl. Her parents Marissa and Dean gave birth to her in 2010, and at the time her older brother Callum was only two-years-old.

At just 22-months of age after many concerns and testing, Allegra was diagnosed with Dravet Syndrome, which is also known as severe myoclonic epilepsy of infancy.

The syndrome meant that Allegra could have up to 100 seizures in a day, and it impacted her development from moving forward after her first two years of life.

Despite Allegra’s syndrome, she was an exceptionally brave and happy little girl.

“She was very bossy and cheeky and just loved life. She was always very happy and she loved learning new things. She would try anything, she did not have any fear” explains Marissa.

Very Special Kids began supporting the Patty family in 2013, and Allegra regularly stayed at the hospice.

“It was really good because we didn’t have anyone else who could look after her. So it meant we could all get some sleep, and we could go and do things with Callum we couldn’t usually do with Allegra” explained Marissa.

Callum also began to receive sibling support at the same time, with a family home volunteer visiting him regularly.

“In the last four years he has only missed one sibling day, he loves them, and I think it’s great for him. It was also great to have the family volunteer come and spend time with him because I spent so much time with my daughter and it was good to have someone who made him feel special.”

At just five-years-old, last year in June, Allegra passed away. Since then the family have been supported with many different bereavement programs at Very Special Kids. Callum now goes to Bereaved Sibling Days and still loves them as much as ever.

“I think one of the biggest things is getting different families together, it’s really useful to meet people in similar situations” said Marissa, who attends regular Coffee Mornings put on by Very Special Kids and attended a Bereaved Parent Weekend recently.

Very Special Kids supports families through bereavement for as long as they require our services, to help us continue to support families like the Patty family, you can donate online here.


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