Paxton, a first and only child, was born a seemingly healthy baby boy on Feb. 16, 2012. When he was 6 months old, his parents noticed problems with his vision and that he was a bit behind with sitting and rolling. Nevertheless, he was a happy smiley baby and fought hard to achieve his milestones. His parents voiced their concerns to his pediatrician and were immediately referred to a neurologist. Testing was done, they found nothing conclusive and he continued to improve throughout the rest of his first year. Just before he turned 1, Paxton required a minor surgery to repair a hydrocele. After being under anesthetic he was never the same, he lost all of the muscle tone that he had worked so hard to gain. His parents were confident that the anesthetic was the sole cause of his regression and he would bounce back from it quickly. Months passed and the regression continued to get worse. He no longer played with his toys, vocalized less and continued to get weaker. In July 2013 he started having seizures, in August an opthamologist found cherry red spots in his retinas that hadn’t previously been there. Shortly after receiving more testing he was diagnosed with GM1 Gangliosidosis. Getting this diagnosis and hearing the doctor say that it’s fatal and that there is no treatment or cure is the worst outcome that his parents could have ever imagined.
On May 15th, 2015, Paxton lost his brave fight against GM1, at home in the arms of his Mom & Dad, just before his 39th Monthday. He fought bravely and so hard for so long. He accomplished many things in his short life and smiled through all of it.