Charlotte experienced her first seizure when she was three years old, originally, she was diagnosed with epilepsy, however, despite being on medication Charlotte continued to have seizures and her parents noticed a regression in her walking, talking and fine motor skills.

Charlotte then proceedeed to have more tests, including a Magnetic Resonance Image (MRI), electroencephalography (EEG) and bloods, and it was only then that she was diagnosed with Battens Disease, an extremely rare neurodegenerative condition where the patient is missing an enzyme and waste material builds up in the brain cells causing the cells to be overwhelmed and become obsolete, a disease so rare, that only 14000 people in the world are diagnosied with it, with only 14 children in Australia. As yet there is no treatment available that can reverse or make obsolete Battens Disease, and currently Charlotte is undergoing a regime of anticonvusant drugs to try to help slow the impact of the disease, however it is predicted she will only live until 14 years old at most, with a break down of cognotive processes which will include blindness, memory loss, dementia and loss of motor skills.

I have known Sarah since she herself was 13 years old and is like a sister to me, so now as much as she does not want to ask for help, I am setting up a gofundme for her little girl so they can take a holiday as a family together or if Charlotte needs to travel for future treatments. Sarah had to unfortunately quit work when Charlotte was diagnosed and her partner Mark has his own small business which covers the families needs financially, however financial aid can help provide lasting memories together as a family with the time they have with Charlotte. As with all diseases, there is optimism for a cure through rigourous testing and creation of new medicines and procedures, though progress remains limited at this point, researchers remain hopeful.

All funds will be used directly on making memories with Charlotte and ensureing she has the best possible life available to her whilst she battles this rare disease.

If you would like to learn more about Battens Disease, and the battle that Charlotte is facing, you can head to https://bdsraaustralia.org/learn/ for more information on Battens Disease.