Sofia was born in 2022 with RDEB. She was diagnosed at birth when she was born without the skin on her left foot.
Her daily life involves one with pain and a long routine. Daily bandage changes take up to an hour every day, and then every second day, a bleach bath and dressing changes which can take up to three hours. Almost every day she participates in therapy to aid her walking and mobility which often leaves her exhausted from the pain she endures.
We wish people knew just how hard it is. Some people don’t understand when we miss events due to weather, or if Sofia has been unwell. This can be a regular occurrence, sometimes we don’t leave the house for up to a month at time, purely because if we do it means Sofia has to suffer the consequences for days on end. We don’t have a normal life, it’s an incredible burden on what is a young new family but we wouldn’t have it any other way for our girl.
Our hope is one day a cure to ease the pain for our little butterfly and other butterflies around the world. No one should have to suffer like they do.
