Sophia Krystina Soto

    Sophia was born at 3:43 on a grey afternoon, the 27th day of april, 2011. She was a full term baby of a very "normal" pregnancy to a young and health mother (me). Just seven ponds and 20 inches long she was a little pink ball of perfection.

We were sent home from the hospital with the information that she had refered on her hearing screen and it would need to be followed up but was not likely a "big deal".

She eventually did present with a hearing loss, feeding issues, severe reflux, sleep disturbances, low muscle tone, delayed gross and fine motor skills, sensory defensiveness and inability to sit, crawl, walk, speek, hold her bottle, or interact with her world independently.

All of theese different diagnosis came from seeing a pretty exceptional squad; 13 different physical, occupational, speech and feeding therapists, a teacher for the hearing impared, and a 6 woman feeding team. At least 6 different audiologists. two genetacists, two nurologists, a nurogenetacist, an ENT, a cardiologist, a gasteroenterologist, a nutritionist, and her pediatritian. BUT after ALL of that and many many hours of fightingfor answers our final overall diagnosis was delivered to us on january 30th of 2014 at 3:00 in the afternoon...

She is the 54th confirmed diagnosis of pontocerabelllar hypoplasia due to spontaneous cask gene mutaion in the entire world. She has one of the rarest diseases on record.(too bad my odds arent that good when I play the lotto ...)

Despite everything she has been through in her short years she is one of the happiest and most genuine human beings I have ever known and she has already inspired so many hearts.

She was put on this earth for a reason. My mission is to help her fully experience her life while providing a never ending supply of truly unconditional love.