Jessika is a happy, smiley and sassy 11-year-old who loves her friends, family and dog, Coco. She enjoys crafts, drawing, shopping, talking to her friends and watching Netflix.
Jessika also has a specific type of EB which is linked to Muscular Dystrophy. As a result, she is mostly wheelchair bound and will eventually be paralysed. Jessika’s family first learnt about EB when she was just 5 days old. She had blistering over parts of her body and skin trauma. A biopsy was done, however it took 2 years for a full diagnosis. Living with EB greatly impacts Jessika’s life. It restricts her mobility and ability to participate in any sports, school camps, social outings with friends and living a normal life.
Jessika also has 3 hour long baths, 3 times a week in diluted bleach and bath oil. The worst wounds need daily cleansing and redressing.
Managing Jessika’s pain can be challenging. Her wounds are likened to 3rd degree burns on top of nerve pain from her muscular dystrophy.
“DEBRA’s help, support and understanding has been invaluable.” Says Jessika’s mum, Emma. “If we need anything, advice or someone to talk to, they are always there…Knowing that they totally understand what we’re going through and can connect us with other EB families, really helps us on so many levels.”