Still fighting the battle! Rest in Peace Mama Rose <3
My name is Nyla, and my mom, Rose, battled scleroderma for over ten years. Mama Rose battled her disease for 14 years, it was hard to process and heartbreaking. I will never forget how Scleroderma changed her so much physically. Autoimmune diseases are mysterious by nature. We were prepared for some of what was coming, but much of it took us by surprise. No one tells you how relentless these diseases can be — how they pick apart the body slowly, almost cruelly, until the person you love becomes a shell of their former self. With my mom, every day became about managing her energy, protecting her from overexertion, and adjusting our expectations.
Before her illness, she radiated life. She was vibrant, outgoing, and always filling the room with her loud, contagious laughter. She had a fierce spirit and a heart full of love, even if it came wrapped in tough words. Her strength, her honesty, and her constant worry for my future were how she showed she cared. She wasn’t just my mother; she was a second mom to my friends, a guiding light to my family, and the soul of every room she entered. Her love was unwavering, her presence unforgettable. I will never meet another soul like hers, she was truly one of a kind, and I miss her every single day.
Beyond her illness, my mom was a woman who deeply loved to cook. She adored chefs like Lidia Bastianich, Martha Stewart, Pati Jinich, and loved shows like Milk Street and America’s Test Kitchen. Scleroderma may have slowly taken away so many parts of her — her energy, her movement, her strength — but it never touched her love for food.
Scleroderma changed everything for our family, and even though her battle is over, we are still fighting. Fighting for a cause, and hopefully a cure so nobody else has to go through what we endured.
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