Life through my eyes...: El Niño Pez...

So yesterday looking through pictures with Tio Ismael, he showed me this picture of this little boy, Marco Antonio, that they call "El Niño Pez" (fish boy). He has Ictiosis Lamelar. A rare skin desease where the skin is like fish scales. He said that my cousin, Ceasar back in New York had heard this little boys story on TV and that he lives here in Peru and he asked him to find out more information. My uncle found out where he lived and contacted the family. He met them and helped them out a bit. He hasn´t gone to visit them in a while since he was diagnosed with cancer. He told me all about the little boy and how they are very poor. He said that they don´t have much money and sometimes they don´t even have enough for the bus fare to take him to school! I knew right away I just had to meet them and do something to help. So my uncle called and asked to see if we could come by to visit the next day. His mother said it would be great.

So we went to the market and bought him some fruit and cookies and candy. I was really looking forward to meeting him. He lives in a little town called Ventanilla. It was maybe 45 minutes away. As we got closer to the area everything was just dirt roads and the houses were small and run down. It made me so sad to think how people can live in such poor conditions. I just wish I could help everyone!

We got to the house and knocked on the door and his mom answered. (I can´t remember her name). She let us in and we walked into a large room with a kitchen table on the left infornt of a window and the fridge was in the corner next to the table. To the right was a couch and a TV against the far wall and another couch against the other wall with a teeny tiny kitten sleeping in the corner and 2 doors to the left leading to the 2 bedrooms in the house. There was a large photo of Mary and Jesus up on the wall as well. The little boy, Marco Antonio, was getting an oatmeal bath. He is supposed to have 3 oatmeal baths a day and have this special medicated body lotion applied to his skin 3times a day too. But they can´t afford it. He gets 1 bath a day and they haven´t had money for the lotions in a while so his skin has gotten worse. When I walked in and saw him sitting in this little plastic tub thing I just wanted to cry. He was so excited to see us. And I shook his hand and his skin was so rough and scaly. His mother finished bathing him and he got dressed and came out to meet me. He was the sweetest happiest little boy! It just broke my heart that he has to suffer because of this desease! He is pretty much deaf because with this desease his ears have gotten completly plugged up because to clean them out is too expensive. He communicates in sign language. We gave him the bag of goodies we got him and he was so excited! He went over to the fridge and opened it because he was trying to tell us that he wanted eggs. The fridge was completly empty! The egg carton was empty. It really really made me so sad for them. My uncle took him to the little corner store and bought him a bag of chips. He showed us all his notebooks from school and his work. He is really smart. He does very well in school his mom told us. He can write his name but I don´t think he can really read. He doesn´t speak at all he just uses sign language. He really liked my camera. He kept asking me to take pictures of him. He was so cute. He was running around everywhere smiling and laughing. He was so loving and always giving us hugs. His mom told me how everything came abot. She said that he was born only 5 months into the pregnancy. When he came out his skin was completly covered with black. The doctors thought he had just gotten burned by the placenta but then they realized it was the way his skin was. She said he didn´t have any ears when he was born, he just had holes on the sides of his head. He was in an incubator for 2 months. They diagnosed him with Ictiosis Lamelar. At first the family had alot of help and support from the state. But a few years ago they stopped helping. One of the lotions he needs is 300 soles(about $100)and the other is about 200 soles. He is supposed to take these other pills too that are about 65 soles a month. They don´t have enough for it all and that´s why his skin has gotten worse in the last year. His father works but it´s still not enough and he has an older brother that has dedicated his life to working as well to help take care of his brother. When his mom was telling me the story about everything she just started crying. It just broke my heart. I wished I could do more. I gave her the money I had in my pocket. It wasn´t much but I wanted to help a little atleast. I´m going to try to start a fund for them I just don´t really know how to go about it. Please pray for this family.