Kenneth may only be eight years old, but his parents, Sean and Amanda, could write a novel on everything he has gone through thus far. Kenneth was born with SATB1 neurodevelopmental disorder, a rare genetic disease that affects his central nervous system. It is so rare that only approximately 45 people worldwide have been diagnosed with it. He cannot walk, talk, sit, stand, and feed himself.
At just five days old, while dad was still serving in the United States Air Force, Kenneth had to be in the hospital for over a month to recover from bowel surgery that was done to repair a very serious blockage. When Kenneth was two, the Grabowski family moved back home to Buffalo, NY after Dad retired from the USAF to be by family for extra support. Kenneth has been in the hospital more than anyone should ever have to be. During these stays he has had many GI surgeries which have involved removing part of his small intestine, part of his colon, and a g-tube placement Kenneth’s parents are his main caretakers making sure Kenneth is fed around the clock with his G-tube because he cannot have liquids safely by mouth, only pureed foods.
Now just because Kennth is disabled and not able to enjoy life as a a typical growing boy, his big brother, Alexander, makes sure Kenneth is always laughing and being loved on. Kenneths number one fan is definitely his big brother, Alexander, who says Kenneth is “his baby."
Funds raised through this campaign will help support Kenneth and his family with the amount of daily medications, doctor visits between Buffalo and Rochester, and lengthy hospital stays.
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