@darcies_story: The hardest part about your diagnosis is we’ll never have long enough with you. If you haven’t heard Darcie’s story let us explain: She was born with a rare genetic skin disease called Epidermolysis Bullosa. Darcie’s subtype of this being ‘Junctional Severe’. Other people have known this to be called butterfly skin, due to the fragility of it. Her skin is prone to blistering and causes her a lot of pain. She’s lost most of her fingernails and they won’t grow back either. It also affects her internally too. Eventually this will cause respiratory issues. Due to this, she isn’t expected to make her 2nd birthday. We had a perfect pregnancy with no issues and were completely blindsided by her diagnosis. There isn’t a cure for this disease💔 hearing this as parents has been extremely hard😔 Our goal is to raise awareness as it’s not been heard about enough. We hope and pray to find a cure so no other family has to go through this🦋 #epidermolysisbullosa #skindisease #fyp #babytok #butterflybaby #darciesstory #debra

Darcie’s Story🦋

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Friday 14 March 2025 18:34:16 GMT