Diego is a 12 year old shining boy that got diagnosed with Propionic Acidemia at birth by newborn screening in Puerto Rico.
His first 4 years were so hard. We literally lived in hospitals, lots of metabolic crisis including high ammonia levels, high ketones, low sugar, dehydration, loss of appetite, nausea, and vomiting. All of that made him have some growth and developmental delays, low muscular tone, speech disorders, and behavioral issues.
We moved to Florida in 2017, where he started getting better treatment for his disease and a year later he got his G tube to help him with his calories and nutrients intake. That is when we started to see a big change in Diego’s height, weight and development. Right now we are living in Georgia and Diego loves it. Maybe it is because we live by the forest and it gives us a feeling and the mood of our lovely hometown. He feels like home here… and it is.
In the last 7 months, Diego has grown 6 inches and gained 25 pounds. You can see how happy and healthy he looks in pictures, and in real life he just dances, laughs and lives. Well, he is at “that age”, a teenager transition, and with PA, his emotions are all over the place. So as happy you can see him, he can also get so frustrated and emotional with situations that he can not understand, or explain. That has been the hardest part recently. It needs patience, love and lots of breathing.
But he makes it through…and then he dances again like no body is watching. Or maybe he goes to his playhouse and plays with legos and his favorite toys – Dinosaurs. And his world is perfect again. People that get to know him in person can tell that Diego is the happiest kid in the world, and if you are around him you can feel the magic and the miracle of living in a world full of hope.