Zahlia has a rare disorder called Aicardi syndrome.
Zahlia has a rare disorder called Aicardi syndrome. Contributed

Funds needed to help family save their 'little battler'

BABY Zahlia was once a perfectly healthy little girl, until a shock diagnosis of a rare syndrome slowly sucked the spirit from this little battler.

The six-month-old no longer giggles and is no longer curious to explore her world.

But the most heartbreaking moment for her grandmother Ann Ackroyd was watching the smiles wipe away from Zahlia's face.

The Mooloolah girl (her family have asked for her surname not to be disclosed) was diagnosed at 12 weeks with Aicardi syndrome.

According to the information given to the family, about 200 people in the world have the rare disorder and life expectancy is short.

Zahlia has no corpus callosum - the part of the brain which allows the left and the right side of the brain to communicate. Ann said it was absolute heartache for the family to witness Zahlia, her sixth granddaughter, enduring many seizures a day. A cluster of seizures once lasted for 22 painful minutes.

Zahlia's eyesight is also affected by the syndrome and she has trouble breathing.

"Zahlia will experience developmental delays and may never walk, talk or interact like a 'normal' child," Ann said. "She will be moderately to severely mentally disabled, yet we will only know the severity of her condition as she develops.

"The side-effect of the medication is likely, at the very least, to cause tunnel vision."

When Zahlia was diagnosed with Aicardi syndrome she was a bright and active three-month-old baby, feeding normally, smiling, giggling, rolling over, sitting up unsupported and rocking on all fours.

"Although she has grown in weight, she can no longer sit up unsupported, doesn't roll over and is like a heavy rag doll," Ann said.

"Tummy time is also too much for Zahlia as she can barely lift her head let alone keep it up. There's no giggling anymore, it is difficult to make eye contact with her and she barely smiles which is the most heartbreaking.

"Zahlia seizures many times each day and sometimes she whimpers through them yet we are powerless to relieve her of this torment."

Zahlia will have many needs as she grows which include medication, prescription formula, endless hospital visits, physiotherapy, occupational therapy, speech therapy, hippo therapy, pool therapy, specific dietary needs, equipment to help her be mobile and various other forms of equipment to maximise her potential.

Ann's daughter has had to give up working to care for Zahlia full-time.

"Emotionally the grief couldn't be any worse, this is every mother's worst nightmare," Ann said.



To raise funds for Zahlia, family and friends are hosting several events over the coming months.

The first is a special screening of the film Diana at the Big Screen Cinemas Caloundra on October 9.

Several home alterations are also required to make it a safe and wheelchair accessible place for Zahlia.

Follow Zahlia's journey, make a donation, or find out more about fundraising events at

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