Meet Anthony – The Face of Resilience
Anthony’s story as told by his mom Elizabeth:
Our baby boy, Anthony just turned 1. He just started rolling over and is trying to sit up. There was a time when he was a newborn when we didn’t know if we would ever see this. These are huge milestones for him. This is because he was diagnosed with Pura Syndrome.
He has sleep apena and low muscle tone so he has a tracheostomy to help him breathe. As he gets bigger it improves, so we are hoping that he will not need it much longer. However, the trach helped him thrive and grow and it was the best thing for him.
Anthony is on his own timeline. I have learned that the hard way. We try our best to have life as “normal” as possible for our other two kids. There is already a bond formed that he has with them. When he was born one of the first things I said was that he was a kind, gentle soul. A year later I know this is still true. There have been many sleepless nights of worry and doubt. Worry for Anthony’s future, our future, our other children’s future. What will this syndrome bring to our lives and how will we cope with it.
We are so lucky to have found our “Pura Family.” It has brought more comfort then anyone will ever know. I wish I knew then to just live and everything will fall into place. I can’t say that it’s not hard but to have our baby here is something I wouldn’t give up for anything. I’ll take him however I can get him.
And to me, he is perfect.
I’m sharing posts about PURA Syndrome all week, the rare diagnosis that Aidan received last year. Please consider sharing your favorite in hopes of leaving no one left alone in rare disease world.