@darcies_story: Our week so far. No matter how hard you try to escape reality, you’re quickly brought back down to earth and have to face it head on again. It’s been beautiful but challenging at the same time. One of the struggles with EB is the heat, as you can see it causes more blistering than usual, no matter how hard you try to keep them cool. It’s sadly part of the process and never gets any easier. Saying that, Darcie continues to smile and doesn’t let too much get to her. Now a little rant time….Daddy and Matilda go swimming, Darcie is allowed to go but we’re not comfortable doing so, so Mummy and Darcie went to baby sensory. Something she enjoys a lot at the Hospice. As you can’t “hide” EB, you get many looks and people don’t know how to approach you, so people just stare and then look the other way. Or if you go near them, they decide to walk away. All I’m doing is showing Darcie how beautiful she is and just because she’s a little ‘different’, it doesn’t mean she should be treated any different to anyone else. If there’s one message from this, it’s don’t be naive, show kindness no matter what. It costs nothing and you never know the struggles people are going through❤️ We’ll never back down from showing the world who Darcie is. She has purpose to this world and I’m confident her story will help change the world of EB. In the future, I’d like to hope that people going through EB, will be able to find comfort in Darcie’s Story. Now, back to this week so far😅 it’s been filled with beautiful memories. We’re blessed that time has been kind to us and allowed us to make these memories with Darcie🦋 life is short and things can change so quickly. We’re appreciating every single minute, of every single day. Thank you for following along with our journey in life with Darcie❤️ #epidermolysisbullosa #fyp #hospice #blisters #wounds #medicalbaby #medicalparents #babytok #butterflybaby #memories #ebawareness #ourlife #bekind

Darcie’s Story🦋

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Wednesday 02 July 2025 18:31:03 GMT