Our little girl June was born so beautiful and perfect to us mum and dad back in 2008. She progressed along as all young minds do at such an early age, then roughly 18-24 months of her life we noticed a change to June’s mannerisms in comparison to her peers, she wasn’t talking and played on her own rather than the other kids. After raising concerns through the relevant bodies/authorities, tests were done and in 2011 June was diagnosed as Autistic. Since after been robbed of her speech and ability to communicate we knew it was much more than just Autism. We had June tested by the Genetic specialists in Sheffield around 2014 and after 3 months of waiting it was confirmed June has/suffers from RETT syndrome,
RETT syndrome is a neurological brain disorder. It is a mutation of the MECP2 gene and it exclusively affects females. The condition makes June prone to seizures and at the minute can be around 15-20 a day. RETT syndrome affects all everyday things we can take for granted such as communicating, been able to walk or even eat, these are just a few to name some of the problems June faces, the condition will only get worse and is about regression and trying to keep what she does in place for as long as we can. We have recently tested June’s current compatibility with a machine called an eye gaze but this was unsuccessful. This new technology if compatible enables suffers like June the chance of a voice through eye movement.
Been unable to use the eye gaze we have found it very hard to guess what June wants or needs resulting in her getting anxious and frustrated. Although we accept that this not going to be easy for her, we want June to have the upmost quality in life for the time she still has with us. June has interacted with and uses as part of her sensory play (which she loves) is a magic carpet. And with so much support already shown in the community we are asking to please help fund this little girls aid to get her this equipment thank you.