Hunter first program gives primary-aged siblings of children with cerebral palsy a short break with a kids respite day

Tanaya O'Neill, 5, Lakota O'Neill, 10, Sienna Mascorde, 4, Nakayla O'Neill, 8, and Connor O'Neill, 6, at the Cerebral Palsy Alliance centre.

Tanaya O'Neill, 5, Lakota O'Neill, 10, Sienna Mascorde, 4, Nakayla O'Neill, 8, and Connor O'Neill, 6, at the Cerebral Palsy Alliance centre.

WHEN Tanaya O'Neill was born, she fitted in the palm of her mother Casey Carr's hand.

Born 15 weeks premature, Tanaya suffered a bleed to the right side of her brain. Doctors told Ms Carr her daughter had suffered brain damage.

Tanaya spent five months in John Hunter Hospital's neonatal intensive care unit before she was admitted to Westmead Children's Hospital for open heart surgery.

Her development was slow, but at 2½ years Tanaya started to walk.

Now aged five, Tanaya has left-sided hemiplegia, which restricts her movement, and requires a wheelchair for long-distance travel.

Ms Carr said caring for Tanaya was a full-time job for her Gateshead family of seven, whose lives revolved around Tanaya's needs.

Siblings Lakota, Nakayla and Connor and stepsister Sienna Mascorde help with day-to-day tasks at home.

Ms Carr said it had been hardest on Lakota, aged 10, and Nakayla, aged eight.

"They had to grow up really quickly," she said.

However, the pair received some respite during the school holidays.

The girls were among 13 local children aged eight to 12 who participated in a Hunter-first program for siblings of children with cerebral palsy.

The Siblings Day Program was co-ordinated by the Cerebral Palsy Alliance and funded by the Greater Charitable Foundation.

The program had a MasterChef-inspired theme and involved cooking competitions, taste testing and a dessert challenge.

Another program for high school-aged children is planned for the upcoming school holidays.

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