Riddells Creek Fire Brigade's Hattie Amos with daughter Mikayla. The group will be collecting for the Good Friday Appeal this week, raising money for the Royal Children's hospital to continue supporting children like Mikayla.

THE Riddells Creek Fire Brigade has an enduring connection with the Royal Children’s Hospital Good Friday Appeal.

Brigade members Hattie and Jason Amos’ daughter Mikayla was born with Dravet syndrome, a rare form of epilepsy that begins in infancy and progressively affects individuals throughout their life.

Ms Amos said Mikayla’s first visit to the Royal Children’s Hospital was in August 2018 at just eight months old, and she had required numerous visits since.

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

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

Research suggests about one in between 20,000 and 40,000 people develop Dravet syndrome, with symptoms including frequent seizures, behavioural and developmental delays, movement and balance issues, and orthopaedic conditions.

The syndrome is a lifelong, medicine-resistant condition with limited treatment options.

“This means medicine must be regularly reviewed as seizures can break through their protection,” Ms Amos 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 will support Mikayla and many other children like her by collecting for the Good Friday Appeal on Friday at Riddells Creek Nursery from 9am to 3pm.

The brigade will also sell coffees and collect money at Riddells Creek Recreation Reserve during Riddell Football Netball Club’s game against Woodend-Hesket on Friday.

Mikayla’s grandmother Gill Metz, the Riddells Creek Fire Brigade secretary, said the group was keen to be back collecting money.

“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. Since 2010 [we have] raised over $44,000.”

Brigade training coordinator Lisa Jones has also experienced the treatment provided by the Royal Children’s Hospital.

Her 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 the hospital’s neonatal intensive care unit and within the first two years of his life was diagnosed with illnesses including cerebral palsy and a hearing impairment.

“Without the Royal Children’s Hospital, Sion would not have received the amazing care he and many other children have gotten,” she 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.”