Story
Hello, my name is Jessica, and I've just turned eight years old. When I was almost two, my life took a turn when I was diagnosed with epilepsy, and as time passed, I faced an additional challenge: ESES/CSWS. This rare epileptic syndrome led to behavioural changes and developmental setbacks. Right now, my medical team is weighing the possibility of brain surgery, as my condition has proven to be refractory epilepsy—it resists treatment.
These health issues have taken a toll, not just on me but on my entire family. I struggle with learning, behaviour, social relationships, and much more. However, my parents discovered special therapeutic blocks that provide support throughout the day. These tools can soothe me or help channel my frequent emotional upheaval. With them, I can engage in therapeutic activities to calm my mind. One block, affectionately called my 'swingy rocker,' lets me work on my balance to regain my mental equilibrium.
I am extremely grateful for the love and care my parents show me daily. They have gone above and beyond to support me and ensure my well-being. In return, I want to do something special for them. Along with requesting assistance to purchase therapeutic blocks, I would also like to ask for help in acquiring a camera monitoring system to keep track of my seizures.
Nighttime poses a particular challenge for my parents as they diligently take turns watching over me. With 99% of my seizures occurring during sleep, their rest is constantly interrupted. My parents can sleep better and feel more at ease by having a monitoring system equipped with sensors. In the event of a seizure, the camera and sensors will promptly alert them, guaranteeing I receive the assistance I need.
I firmly believe that with the therapeutic blocks and the night monitoring system, our lives will become more normalised, offering us all a sense of reassurance and relief.
Thank you for considering supporting us on this journey towards a more balanced and secure life.
With heartfelt appreciation,
Jessica