According to the mother, Rebeca, when she was pregnant, doctors decided for an early induction of labor due to an excess of amniotic fluid surrounding the fetus. Unfortunately, nobody knew that the journey ahead would be fraught with unexpected twists. Only half an hour after her birth, doctors noticed something wrong with the newborn baby, MatiIda. They initially believed she had a blue bruise on her face that extended across one side of her body. However, as time passed, they reclassified it as a birthmark. But it wasn’t until two weeks later that MatiIda was diagnosed with Sterge-Weber syndrome, an incredibly rare neurological skin disease that also brings with it paralysis, learning challenges, and seizures.
The child’s health deteriorated rapidly, leading to her admission to the Children’s Hospital. A once joyous time for her parents quickly turned into a nightmare, as they grappled with the fear of losing their child. PauI, MatiIda’s father, expressed the family’s anguish during those harrowing moments: “We couldn’t travel with her as she was so ill. As we stood watching her being taken away, we didn’t know if we were going to see her again. We’d been so thrilled at our baby’s coming, now within a matter of hours we didn’t know whether we would even see her alive again.”
Their heartbreak deepened when they discovered that MatiIda had two holes in her heart. The odds were stacked against her, but MatiIda survived the challenging surgery. The journey was far from over, as she began a series of laser treatments to address her distinctive birthmark—a process that could take up to 16 years for complete removal. Despite the agony of the painful laser treatments, MatiIda remained a happy child. She faced the unkind gazes and questions of onlookers who sometimes jumped to hurtful conclusions about her appearance. PauI lamented these misconceptions, wishing people could look past the birthmark and see the remarkable young girl she truly was. MatiIda’s health struggles had also left her almost blind, and she was unable to walk without assistance.
Nevertheless, she demonstrated incredible strength, taking a few steps with the aid of a special walking frame. Her father expressed immense pride in MatiIda’s spirit, saying, “Despite everything she has been through, she has a smile for everyone. She’s doing fantastically well. We are unbelievably proud of MatiIda, she is just amazing—we just live every day as a bonus.” Today, MatiIda is 11 years old, and her family continues to support her journey. They initiated a crowdfunding campaign, seeking funds for a new wheelchair that would allow MatiIda to pursue what she loves most: spending time outdoors and away from bustling crowds. The family’s story is a testament to love, hope, and the indomitable spirit. MatiIda’s journey is a reminder of the human capacity to triumph over adversity, where love and courage conquer the most challenging circumstances.
