Our daughter, Chelsea was born on the 5th of September 2010, in Queensland, Australia, but things all went pear shaped in November last year when she was just 2 ½ months old; we noticed her making jerking movements. Chelsea was then diagnosed with Cortical Dysplasia (a brain defect) and Epilepsy, her jerking movements were seizures. Our precious little baby and I spent 5 weeks in hospital over Christmas and New Years 2010. Recently, at the age of 11 months, after many tests at the Mater Children’s Hospital, she was diagnosed with Aicardi Syndrome & Cerebral Palsy. She has been classified as disabled and takes several anticonvulsants medications and is developmentally delayed. Aicardi Syndrome is an extremely rare genetic disorder with virtually no support groups specifically aimed at Aicardi Syndrome in Australia. Many Aicardi’s children don’t walk or talk, are mentally challenged and require a full time carer, the severity of the Syndrome can vary so we are just hoping for the best and staying positive for Chelsea.
Chelsea battles with daily seizures that has effected her development. She is getting there slowly – at this point she is 3 years old and can roll, sit when placed, uses her left arm for holding / reaching for things and occassionally babbles. She loves playing in the pool, going to the park and especially having a turn on the swings. She loves people talking to her, knows her name and has always got a smile upon her face which fills us with such happiness. We love Chelsea dearly and wish for her to be happy, healthy and able to live life to the fullest.
Chelsea’s specialist needs include: Physiotherapy, Speech Therapy, Hydrotherapy, Bowen Therapy, Occupational Therapy, Respite, Seizure Mattress, Air conditioner, Conductive Education, Medications, ipad for communication and specialised mobility aids.
We are currently in the process of organising a couple fundraising events. To give Chelsea the Best Start to Life – Early Intervention is the Key! Have a look on the tabs on the right to find out more and how you can get involved!