Disorder Causes Chaos for "Angel Mom" in May
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In a twist of unfortunate events, a family with a 12-year-old child named Juliana, who has Angelman syndrome, faced a difficult weekend in May. The tranquility of their home was disrupted when a hot water heater unexpectedly burst on a Saturday morning, causing flooding in the kitchen and dining room.
The incident added to the stress and chaos that often characterises the month of May, with end-of-year activities for Juliana's milestone and the usual celebratory events such as the end of school and graduations. The family worked diligently to clean up and straighten out the affected areas, working well into the night.
Juliana's breakfast table, modified to accommodate her needs and allow for easy movement, proved to be a beacon of resilience amidst the chaos. Despite the changes and upheaval in her home, she was able to navigate her modified table as usual, bringing a moment of joy to the family during a challenging time.
The family also moved furniture around to ensure safety for Juliana, who has Angelman syndrome. Living with this specific genetic syndrome can be challenging and stressful, and a 2018 study in the Orphanet Journal of Rare Diseases found that mothers of children with such syndromes experience stress levels similar to mothers of children with autism.
To manage the moisture caused by the flooding, the family used fans and a dehumidifier. The recent floor renovation, hoped to bring a return to normalcy for the family, was unfortunately damaged in the incident.
In a silver lining, the month of May has also become more eventful due to Juliana's milestones. Marisa Wexler, MS, a medical expert who developed new guidelines for the care of individuals with Angelman syndrome, detailed best strategies that have been instrumental in navigating these challenging times.
As Juliana finishes her last year of elementary school, the family looks forward to the future with hope and determination, ready to face whatever challenges come their way.
