Special support group
AS the mother of a palliative patient, Giulia Lake says it is all about quality of life for her fiveyear-old daughter Téa.
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,” Ms Lake 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 Princess Margaret Hospital-based Kalparrin, a support group for families of special needs children, Ms Lake said she had received 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.
“You feel very isolated in the disability world; when you can talk to other mothers it gives a chance to talk without judgement.”
Kalparrin won a $100,000 grant from Impact100 to support their family and sibling support program late last month.
Kalparrin general manager Christine Stott, who has lived experience with a special needs child, said Impact100 was “amazing”.
“They’re an organisation of ordinary people coming together without the fanfare,” Ms Stott said.
Ms Stott said it was important to fund mental health support, services to talk about relationships and to help people understand it was OK to be sad and stressed.
“You lose spontaneity and it impacts on the family dynamic,” she said of the knock-on effect of having a special needs child.
Giulia Lake with Téa.