At 12 weeks of age our precious daughter Zahlia was diagnosed with Aicardi Syndrome which is an extremely rare genetic disorder resulting in developmental delay and most children don’t walk, talk and struggle with the basics such as holding their head up, crawling or even smiling. She has an absent corpus callosum (the middle part of the brain which communicates between the right and left sides), severe brain damage on both hemispheres, daily seizures and lesions on her retina’s resulting in vision impairment. There are only around 180 – 200 Aicardi children currently alive in the world as life expectancy short. There are virtually no support groups for families dealing with Aicardi Syndrome so questions go unanswered and help is hard to find. Zahlia was reaching some milestones but at age 4 months regressed significantly which is typical of Aicardi Syndrome. Zahlia battles with seizures many times a day which affect her development. Her seizures are strong and she often whimpers through them. Zahlia requires full time care and we’ve administered several anticonvulsants although haven’t found a medication yet which has stop the seizuring.
Zahlia’s favourite place to be is outside. She loves colour, movement and especially interacting with other children. She also loves animals but our staffy’s are more inclined to jump all over her rather than play nicely with her. In the future we’d love to build a home that made it possible to care for all Zahlia’s special needs in a safe environment. Click on the tabs above to see how you can get involved in upcoming fundraising or how you can donate.
Currently Zahlia’s specialist needs include: Physiotherapy, Speech Therapy, Hydrotherapy, Bowen Therapy, Occupational Therapy, Vojta Therapy, Respite, Medication, Air conditioning, Seizure Mattress and Conductive Education. She will have many other special needs as she grows such as an iPad for communication and specialised mobility aids.
If you would like to be a part of Zahlia’s support network, please SHARE her facebook page… firstly to help raise awareness of this rare syndrome, also to keep up to date with any fundraising events held in Zahlia’s honour & finally for you to have the privilege of being a part of Zahlia’s journey.