It is ironic that “happy” is a symptom of Angelman Syndrome, a rare neurogenetic disorder that causes global developmental delays, lack of speech, and seizures. Stetson, age six, was extremely happy and a “good” baby. Born at 8lbs. 6 oz. and acting so full of life, it was surprising at ten months to notice developmental delays. At 12 months, Stetson began PT and OT once a week at home. Stetson was so social, engaging, and happy, and his parents were told he would probably ‘catch up’ quickly. At 16 months, Stetson had his first of many seizures and was given a seizure disorder diagnosis. Over the next six weeks, Stetson had multiple seizures, as the family awaited genetic testing, which confirmed his Angelman Syndrome diagnosis.
Stetson’s mom stopped working outside the home to care for him. They have spent the last four years traveling to specialists all over the east coast and even participating in brain studies to help learn more about this rare disease. Stetson participates in speech therapy twice a week, hippo-therapy, and swim lessons as well as going to kindergarten, where he also receives additional PT, OT, and speech therapy.
Children with AS tend to be very sensory seeking and have an oral fixation, but overall, they are happy kids. Stetson loves to wander, climb, and play with whatever he can get his hands on. He can be very impulsive and is not always safe while exploring. He has to be watched non-stop, even in his own home, to make sure he is safe. With the increasing demands of a new baby brother, a sensory/therapy room will allow Stetson to explore and play safely while attention is shared between two children. It will also provide him with the opportunity to improve his motor skills at home while playing and offer some of the independence six-year-old boys crave, things that are important for his development. Stetson’s parents will have peace of mind knowing he is both safe and getting the proper stimulation.
The past five years have been replete with travel, testing, and treatment. With an in-home sensory/therapy room, Stetson’s whole family will benefit from more routine day-to-day life at home.