Open Heart Surgery, Misophonia
For most of us, the sound of a child's breathing elicits a sense of tranquility and calm. For nine-year-old Eliavah, the sound of her sister breathing in her sleep is far worse than the proverbial fingernails on a chalkboard. Eliavah suffers from misophonia, which creates intense fight or flight responses and anxiety triggered by specific sounds many people don't even notice. It is one of many diagnoses she has, including Tetralogy of Fallot, congenital heart abnormalities for which she had surgery at four months, hypotonia, which contributed to her pervasive developmental delays in both fine and gross motor skills and ADHD. Eliavah is not able to share a bedroom with her sister as the sound causes great anxiety and affects her sleep. Her day to day life is quite stressful as her body physically reacts to trigger noises, yet she keeps her positive attitude and love for learning.
Since she cannot share a room with her sister, Eliavah currently sleeps in her baby brother's room, and he sleeps in their parent's room. It is not easy for Eliavah to find a place in her home where she can unwind and safely escape the many stimuli of a typical family home.
Eliavah's parents would love to turn their dining room into a bedroom for her. They imagine a place where Eliavah will have a sensory-friendly sanctuary of her own. Like most nine-year-old girls, she would love to listen to her favorite music ( David Bowie and Michael Jackson) in a bean bag chair surrounded by her stuffed animals, barbies, and crafts without stimuli that trigger negative responses. Eliavah's heart has remained healthy, and she has such a passion and love for life. One day she hopes to be a Vet or maybe even be in a band with her best friend, her sister.
A new bedroom in the home would not only enable Eliavah to safely escape from the sensory overload of day to day life, but it will also allow her brother to move to his own room. Eliavah's dedicated parents will have their bedroom to themselves - something most of us take for granted, and the peace of mind that Eliavah is safe and comfortable.
Photography by Dinah Sutton Photography
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