Harrison’s Story


Harrison was born with a very rare muscle disease called ‘Congenital Myasthenic Syndrome’.  Although it is considered a non-degenerative disease, it is a life-long condition, which will always affect the strength of his muscles and their ability to perform as they should.  Although all of Harrison’s muscles are affected, the muscles that are most compromised are the bulbar muscles which help him to eat and breathe.  Because of this deficit, Harrison breathes through a trach, sleeps on a ventilator, and eats with a feeding tube.  Since birth, he has been followed by numerous specialists across the state and has been immersed in physical, occupational, speech, and feeding therapies.  Despite all of his challenges, ‘Harry’ (as he prefers to be called!) is a ball of energy and a pure joy to be around.  He loves his friends, playing on the playground, going to church, and dressing up like super heroes.  He is a super confident and happy child and one of our biggest goals as parents is to do all that we can in order to give him a 

Stay Connected: