Volunteers Hattie and Jason Amos's daughter Mikayla was born with Dravet Syndrome, a rare form of epilepsy that begins in infancy and progressively impacts individuals throughout their lifetime.

Mikayla's mother Hattie said that Mikayla's first visit to the Royal Children's Hospital was in August 2018 at just eight months old, and she has needed numerous visits since.

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"While the unplanned hospital visits have reduced significantly, Mikayla is still actively seen by her treating teams in an outpatient setting," he said.

"Mikayla still experiences seizures, but they are currently better controlled and manageable in the home setting."

Reports suggest just one in 20,000 to one in 40,000 people have Dravet syndrome, with symptoms including frequent seizures, behavioural and developmental delays, movement and balance issues, orthopaedic conditions and delayed language and speech issues.

Dravet Syndrome is a lifelong, medicine resistant condition with current treatment options limited.

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"This means medicine must be regularly reviewed as seizures can break through their protection," Hattie said.

"The medical care by Ambulance Victoria and Royal Children's Hospital has been amazing. We have also been supported immensely by the Sunbury and Cobaw Community Health Team."

Riddells Creek Fire Brigade is getting behind Mikayla and many other children like her by collecting for the Good Friday Appeal on Friday at Riddells Creek Nursery from 9am till 3pm.

They will also be selling coffees and collecting at Riddells Creek Football Oval during the game on Friday.

Mikayla's grandmother Gill Metz is also the Secretary at Riddells Creek Fire Brigade and said they are keen to be back collecting money.

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"We are excited to be back to face-to-face collecting as the last two years have been virtual tin rattling only," she said.

"We been collecting for the RCH for over 25 years and since 2010 it has raised over $44,000".

Riddells Creek Training coordinator Lisa Jones has also experienced first-hand the amazing treatment provided by the RCH.

Lisa's grandson Sion was born at premature at 27 weeks, with a perforated bowel and weighing just 1.21kg.

He spent a total of 115 days in Neonatal Intensive Care Unit, and within the first two years of his life, was diagnosed with many illnesses including Cerebral Palsy and a hearing impairment.

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"Without the Royal Children's Hospital, Sion would not have received the amazing care he and many other children have gotten," Lisa said.

"Lets' dig deep and give to the Royal Children's Hospital so they can continue their research and buy the equipment they need to help our children."

Members of the community are urged to give generously on Friday, either through CFA road-side and face-to-face collection points, or through their local brigade's online tin shake at virtualtinshake.com.au/sponsor

For more information on Dravet Syndrome, please visit dravetfoundation.org/what-is-dravet-syndrome

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