Hospital Souvenir Transforms Traumatic Recollections into Positive Ones
In the early hours of Father's Day morning in 2011, Marisa Wexler's world changed forever. Her daughter, Juliana, had her first seizure, marking the beginning of a new journey for the family. This event led to the diagnosis of Angelman syndrome (AS) at just two years old, an early diagnosis that allowed for the implementation of beneficial early interventions.
Juliana was admitted to Children's Healthcare of Atlanta, and the family's world was turned upside down. However, amidst the fear and uncertainty, a small piece of clothing took on a significant meaning - Juliana's robe. Marisa kept the robe as a useful reminder from their first experience with AS, and it has since become a symbol of better things and a part of their daily routine.
Ten years have passed since Juliana's four-day hospitalization at Children's Healthcare of Atlanta. Today, Juliana, now 12 years old, continues to wear the robe for breakfast before school. The robe, though small, will not fit her for much longer, but it remains a cherished keepsake.
Juliana's robe serves as a reminder of the family's journey with Angelman syndrome. Seizures, a common occurrence in people with AS, affecting about 90% of cases, have become a part of their life. Yet, the family, including Marisa Wexler and her husband, have grown and improved from the frightened couple they were during the hospital stay.
Marisa values the visual reminder of all they faced and survived through Juliana's robe. She plans to keep it as long as possible and find a new life for it after Juliana outgrows it. For Marisa, the survival of Juliana's robe is a small part of the battle for sustainability.
Marisa Wexler, an expert in Angelman syndrome treatment, has dedicated her life to helping others facing the same challenges. Though the name of the institution where she worked remains unknown, her impact on the lives of those with AS is undeniable.
Despite the challenges they face, the family has found strength and resilience in the face of Angelman syndrome. The fear associated with AS has diminished, but some days still present challenges. Yet, through it all, Juliana's robe stands as a testament to their journey and the love that has carried them through.
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