We first met Evie-Mae in July 2014 for her Pre-school taster session, at the time Evie was unsteady on her feet but happy and explored her new environment with confidence. By Evie’s first session in September she was unable to walk unaided but still as happy as ever and still full of confidence. As the end of September approached Evie had stopped walking, after many doctors test and hospital visits Evie’s family were given the devastating news that she had a rare incurable life-limiting disorder.
Giving a little helps a lot!
Infantile Neuroaxonal Dystrophy (INAD) affects the nerve axons in the brain and other parts of the body, causing a progressive loss of vision and physical/mental skills.
Evie has already stopped walking, it’s only a matter of time before she stops crawling and loses all of her abilities. The harsh truth is that from this point onwards she will just continue to deteriorate. The only thing her family can do is keep Evie as happy and as comfortable as possible. We aim to raise money to support Evie’s family to make do this as well as raising awareness for INAD.
We strive to continue to support Evie’s development and giving her and her family memorable experiences and creating an enabling environment to support her individual needs.
Money raised from this page will go towards giving Evie access to specialized therapies and equipment that is not always available or accessible on the NHS. These will make home life for Evie’s family less stressful and will make Evie more comfortable. Evie’s family are hoping to make a sensory room in the home as this will enable Evie to explore using her senses as her physical and mental skills deteriorate. This play is very important to Evie and will continue to promote her cognitive skills.