Mason is our 5-year-old “SWAN” – he has a syndrome without a name. He was born with multiple congenital anomalies – birth defects in almost every system of his body. Extensive genetic testing has yet to reveal a definitive answer as to why he is unable to crawl, stand, talk, walk or do much for himself yet. Or why he has sickness and infections almost constantly, despite weekly infusions to try to boost his immune system. But one thing we know – none of it has stopped him from loving life! He has a smile a mile wide and he brightens the lives of all who know him. He is beginning to make choices and play games with a Big Mack talker. He loves to hit the button when it says “Hey Micah! Where ARE you?” And his brother will pop up and say “peekaboo!” He loves playing over and over again! Some of his other favorite activities are going to the park, water play, car rides (except red lights!) and silly sounds. He enjoys his therapists too and is learning to give a “high five” to say hello! Because of his severe sensory impairments (he can’t see or hear well), he struggles with anxiety and propioception. He also has difficulty sitting on the floor and playing at the same time due to arching and tone issues. We are hoping to find a seating solution level to the floor that would allow him to play with toys and participate in activities while supported in a way that is comfortable and relieves his stress caused by lack of support. Thank you for such a wonderful program to help children like Mason! —
Mason! A SWAN with a syndorm without name!