AS the mother of a palliative patient, Giulia Lake says it is all about quality of life for her five-year-old daughter Téa.
Bayswater resident Ms Lake said Téa’s first seizure happened just 10 minutes after she was born.
“She has capillary malformation microcephaly syndrome and there are only 13 people in the world with the condition,” she said.
“If there is anything we can do to pack her time full of fun, we will do it.”
Ms Lake said Téa had daily seizures, took medication every day and was in hospital every 4-6 weeks.
Through Kalparrin, a support group for families of special needs children, Ms Lake said she had received family support for more than four years.
“I’ve been on mothers weekends, my husband had been to dads dinners, we took Téa on Up and Away day and even though she’s visually impaired, she couldn’t have a bigger smile on her face,” she said.
Princess Margaret Hospital-based Kalparrin won a $100,000 grant from Impact100 to support their family and sibling support program late last month.
Kalparrin general manager Christine Stott said Impact100 was an “amazing”organisation.