Our son, Cooper, was born 6 weeks early, perfect and healthy... 10 little fingers, 10 little toes, piercing blue eyes and the cutest little crooked smile. His development was slow, but we were told that preemies are often delayed and he would catch up. We were encouraged to give him time.
When Cooper didn't roll over at 7 months, couldn't sit up and was still having trouble with head control, we were worried. Initially, he was thought to have severe hypotonia and we began an intensive therapy program 3 days per week to work on tone and muscle strength. When he didn't improve we were referred to a neurologist and an ophthalmologist to help narrow down or rule out other possible conditions. One day before Cooper's MRI the ophthalmologist discovered a cherry red spot on his retina. We were told this was not a good sign and it drastically narrowed down the possibilities to 1 of 3 conditions. All of which were lysosomal storage diseases, and none of which had a good prognosis. On May 16th 2008 Cooper, our 10 month old baby boy, was diagnosed with GM1 Gangliosidosis. GM1 is rare, genetic, neurological, progressive, fatal, and there is no cure. It is devastating information that no parent is ever prepared to hear. We were told an overwhelming amount of information and are still learning.
Cooper inspires us everyday and kept us laughing with his contagious giggles and sweet smiles! He never spoke, but could definitely let us know what he preferred with his coos, facial expressions, and even a few signs.
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When Cooper didn't roll over at 7 months, couldn't sit up and was still having trouble with head control, we were worried. Initially, he was thought to have severe hypotonia and we began an intensive therapy program 3 days per week to work on tone and muscle strength. When he didn't improve we were referred to a neurologist and an ophthalmologist to help narrow down or rule out other possible conditions. One day before Cooper's MRI the ophthalmologist discovered a cherry red spot on his retina. We were told this was not a good sign and it drastically narrowed down the possibilities to 1 of 3 conditions. All of which were lysosomal storage diseases, and none of which had a good prognosis. On May 16th 2008 Cooper, our 10 month old baby boy, was diagnosed with GM1 Gangliosidosis. GM1 is rare, genetic, neurological, progressive, fatal, and there is no cure. It is devastating information that no parent is ever prepared to hear. We were told an overwhelming amount of information and are still learning.
Cooper inspires us everyday and kept us laughing with his contagious giggles and sweet smiles! He never spoke, but could definitely let us know what he preferred with his coos, facial expressions, and even a few signs.
Cooper loved to be outdoors and moving at all times. I think that since he couldn't move on his own, he moved through us. So, we were constantly in motion, swinging, bouncing, rocking, tapping and tickling! He throughly enjoyed lights and music, but swimming topped the list by far. The day we received Cooper's diagnosis we knew our time together would be limited. On July 8, 2009, just after his second birthday, our sweet baby boy earned his angel wings.
