• 5 Years Old

  • Ohtahara Syndrome (Epilepsy)

Five-year-old Amir recently smiled a huge grin to his dad – something so many parents take for granted, but dad noted as a triumph.

Five-year-old Amir is the joy of his parents’ lives, and like other parents, their goal is to make sure he feels safe and loved. Loved he is. Safe, he is not always. At just two years old and after numerous tests, Amir was diagnosed with Ohtahara Syndrome, a rare type of epilepsy characterized by hard to control seizures and developmental delays.

He is non-verbal, non-mobile has respiratory problems, and vision limitations, and still requires the same care as any five-year-old.

He is non-verbal, non-mobile has respiratory problems, and vision limitations, and still requires the same care as any five-year-old. For most kids, bath time is bonding time and a relaxing way to end the day, but for Amir’s parents, it has become treacherous. It takes both parents to maneuver him safely from his chair to the tub, and bathroom use requires the removal of his permanent tracheostomy as well. Despite his limitations, Amir is able to attend school and uses switch devices to communicate. Due to his wheelchair and numerous medical devices, his current room and bathroom make day-to-day care a considerable struggle.

A safe bathroom and a bedroom designed with Amir’s sensory requirements may be just the thing needed for him to end each day with a big smile.

Photography by Sweet Life Photography by Kim
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