Tully's rare diagnosis has inspired a community to support her family. Picture supplied

Nicola Zammit's 16-month-old daughter, Tully Mae Mullard, is the only person in Australia living with EMC1, a rare and non-inherited neurological condition.

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Diagnosed at just nine months old, Tully battles severe, incurable epilepsy and daily seizures that impact every facet of her development, from her vision and hearing to her mobility and speech.

It's a challenging physical and financial reality of the condition for the Heathcote family; Tully cannot sit and will likely never walk, meaning her care requires constant physical support. "It's like carrying a newborn," Ms Zammit said.

Tully also has hip dysplasia and sleep apnoea, and has already spent more than 300 days in hospital. While the family is supported by the NDIS, Ms Zammit said "with what she had, it's not enough," describing the situation as a "constant game of trying to advocate for more funding."

The family feels stuck in limbo awaiting NDIS decisions, particularly as feeding therapy costs alone have jumped from $180 to $370 a month. Ms Zammit said the administrative burden is immense. "It's taken me months to gather so much documentation and reports," she said. "At times it's at least six hours a day admin."

Ms Zammit said a previous request for equipment even resulted in a full plan reassessment where therapy and consumables funding were reduced. NDIS support remains critical she said. "I've seen meaningful progress and quality of life improvements," she said.

Thanks to a specialised stroller, Tully is able to sit at the table with her family, play with toys on a tray, and get out in the community. "There is also genuine enjoyment and engagement through her therapy supports and an emerging potential for communication through eye gaze technology," Ms Zammit said.

Tully's spirit remains bright despite her inability to attend standard playgroups. "She smiles a lot, and she loves nature - seeing shadows from the trees and feeling the grass," Ms Zammit said.

This July, the Sutherland Shire community is uniting to support Tully through a team of staff from Poppi's Preschool and Long Day Care in Miranda. Alongside their families and friends, the preschool team will be hitting the pavement for the annual Sutherland to Surf on July 19. Their mission is to raise vital funds for the essential therapies and specialised equipment required to manage Tully's complex care outside of a clinical setting.