A beautiful baby boy born February 16, 2012

Paxton is our first and only child, he was born a seemingly healthy baby boy on Feb. 16, 2012. When he was 6 months old we 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. We brought up our concerns with his paediatrician 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 anaesthetic he was never the same, he lost all of the muscle tone that he had worked so hard to gain. We were confident that the anaesthetic 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 the ophthalmologist 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 we could’ve imagined. We try to remain positive, focusing on making his life the best we can and enjoying the time we have with him. Paxton is currently 3 years old. He continues to fight hard, make small gains and smile despite the increasing amount of challenges he faces every day. His favourite activities are swimming, playing with light-up toys, music and cuddles.

5/15/2015 – Early in the morning Paxton lost his brave fight against GM1, at home in the arms of his Mom & Dad. Tomorrow would’ve been his 39th Month day. We are proud of him for fighting so hard for so long. He accomplished many things in his short life and smiled through all of it.