Caroline georgia: JUNCTIONAL
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On October 26, 2023, EB awareness day, Caroline Georgia was born - call it fate. Little did I know, within 48 hours of her arrival, we'd be leaving the hospital with her tiny fingers raw, and her cry raspy and faint. Instinct told me something was amiss. In those early hours, I delved into everything I could about EB. Returning home, a whirlwind of emotions engulfed me—anger, shame, guilt, disbelief, grief, fear, and more anger. However, as weeks passed, a transformative decision emerged: to embrace Caroline and her EB. With this acceptance came newfound patience, trust, and profound joy, albeit still tinged with fear and occasional anger.
In those initial weeks, I learned through trial and error—like discovering the perils of heat for Caroline's delicate skin, which only caused more blisters. At two months, her breathing worsened, and we received the diagnosis of severe junctional EB. The fight began—a relentless quest to navigate a world without a cure. Amidst hospital stays and postpartum challenges, I found strength in advocating for Caroline. I assembled a dedicated team spanning continents, from the UK to various parts of the US, all rallying for Caroline Georgia—my butterfly girl. Each month on the 26th, we celebrate Caroline's life with cake, cherishing the precious moments. With EB, there's no hiding—it compels vulnerability, making presence a necessity. Caroline, now approaching six months, will soon begin treatment. She delights in morning stories, is ticklish, and adores observing her siblings. Caroline is spirited, wise, beautiful, and courageous—a true butterfly girl, and I am so lucky to be her mother. Through EB, I lost and found myself—a better woman, a better mother. It's here, in this journey with Caroline Georgia, that I discovered the boundless love of a mother—unyielding, unstoppable, and beautifully relentless. -Caroline Georgia’s mother, Aisha 
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