The story of analisha
http://www.rettsyndrome.org/for-families/featured-angel
Featured Angel: Mariano Jonell Rosa
My name is Mariano Jonell Rosa, named after the baseball pitching legend Mariano Rivera from the New York Yankees or you can just call me “Nano”.
At just 2 weeks old I had contracted a viral infection. At 2 months, I was hospitalized for “seizure like” activities and pneumonia. My seizure activity was actually silent aspiration. That was when I got a little tube that went through my nose to my belly so it could feed me or give me my medicine. Later in January 2015, I went for another visit to the hospital for bronchiolitis, acid reflux, fevers and aspiration. A few months later that is when I got my “G Button” and fundoplication. The surgery was scary for my parents but I overcame such a strong adversity. I’m a born fighter.
At all my hospital visits I had to take so many tests, mommy and daddy wanted to find out why I wasn’t reaching my milestones or why I was always getting sick. That is when the nice genetic doctor told my parents I had a genetic disease called “X-linked intellectual disability type 13 associated with a mutation of the MECP2 gene”. Mommy calls it “MECP2 Variant”, for short. It is like what my Rett Sisters have but I’m a boy. It means it can be a scarier and more complicated.
I am a mix of Puerto Rican, Chamorro, Filipino and Irish, but everyone knows I am a Texan because I was born in Fort Sam Houston, Texas. Maybe that is why I am so tough. Its in my blood. I show my parents and the world everyday that I love my life. I fight everyday for it. I have many cousins that I love to hang out with when I visit family. I love to roll all the time, watch cartoons, listen to music (especially KSBJ when I get to ride in the truck to visit my friends at the clinic). I take many trips with mommy or daddy to the clinics, that way the doctors can learn more about me and maybe one day help another kid just like me.
I have many good days, especially the day’s daddy gives me a little chocolate ice cream while mommy isn’t looking (Shh… don’t tell her). I have a huge reason for living and it’s not just for my family. I think it is because God sent me here to share with everyone how each life is precious and most especially for one-day to help find a cure for my brothers and sisters that fight the same battle.
My Name is Mariano Jonell Rosa and I approved of this message. #MarianoJonell #cureMECP2 #cureRetts