@darcies_story: Bath day. Life with EB is very complex and challenging. No day is ever the same. We have good and bad days. We just have to go with the flow and deal with things as they come. Today has been positive. Normally when it comes to bath time, it’s not enjoyable and it’s extremely stressful for us all. This has been every bath time for the last 4 months. Today took us by surprise, we put Darcie’s favourite song on and she was calm and content. It put a smile on all of our faces. We also hit a new milestone, whilst in the bath, we noticed Darcie has TWO teeth at the bottom, it brought a tear to our eyes. To some this may seem silly, but when you see and read other ‘Junctional Severe’ babies stories and get told your baby isn’t expected to see her 2nd birthday, we know we might only have a few months or a year. So every milestone hits differently and means that bit more. There’s no cure for EB. It’s a cruel disease. Babies and children live in daily pain. Everyone deserves a pain-free life. The fight will never stop and we hope one day the cure can be found. Even if it’s not in Darcie’s lifetime, we hope by raising awareness, it can help another family and give their child a chance. We want to share the good and the bad and really give a proper insight into life with EB. #epidermolysisbullosa #skindisease #fyp #babytok #butterflybaby #darciesstory #bathtime #ebawareness #wounds #babygirl

Darcie’s Story🦋

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Region: GB

Monday 21 April 2025 17:56:52 GMT