The stories of our children

Emily Rose Marie

Meet Emily Rose Marie. A beautiful fairy born in the water by a mom and dad who had called her so much. She doesn’t sleep easily, she cries so much but after the difficult first few months those chubby cheeks color the first year of joys and dreams for the future. Then there is the suspicion of a very serious disease, eight months of terror and distress in order to be diagnosed, from two different countries. A total shock to mom and dad.

Emily grows up, at the age of three she says only a few words but dances, runs, plays with her dog Zoe and the horses, which she has known since she was a very young girl. Then participation in an invasive trial, with the hope that the disease can be slowed down. Unfortunately, the experiment does not produce the desired results. Emily gets worse, incest, slows down, is less present, but still has a great joy of life. It is she who gives strength, light, hope, who teaches love for small things. She who educates her parents and makes them rise, helps them get closer.

Here comes the first little brother, Oliver. Mom Grace works so her fairy’s quality of life. Thanks to Cannabis, despite getting worse, Emily r-exists, has small awakenings, rekindles her attention, regains her composure and above all manages to sleep. And then he spends a lot of time in nature with his mother, along the river of Merano. A sister, Maya, also arrives: Emily is now at the center of a tribe that claims every day the promise to make her happiness and dignity a priority over everything.

Today Emily is eight years old, she bears obvious signs of this tyrannical disease that is slowly extinguishing her. However, he did not turn off his smile, which appears tenacious on that candid and fairy face. Emily vibrates again, tireless on horseback in the woods of Trentino, in the magic of nature of which she feels part. Because Emily is not only a baby Sanfilippo, Emily is a muse, it is poetry that tells of a single moment that becomes an eternal feeling of gratitude. Emily is contemplating beauty: the more she contemplates her, the more she reflects her: difficulties, frailties, shortcomings increase, yet she maintains a serenity and grace such as to make her feel full.

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