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Success Story: Simon

FUND IT FORWARD received this letter from his parents:

Simon was born in March 2013 and was thought he was perfectly healthy, despite a very complex pregnancy. The following weeks led to serious concern as he was not eating or growing, and was losing weight. He was sleeping upwards of twenty hours a day. At one month of age, he was admitted to the NICU for Failure to Thrive.

Almost two years later, two less jobs, over a dozen hospital stays, and a multitude of testing later and we still do not know the diagnosis.  Simon still does not eat on his own. He underwent surgery to place a feeding tube in November of 2013. He has also been receiving occupational therapy, speech therapy and feeding therapy over that time and has made major strides since. He has grown, he has been passing all of his milestones, and he is the happiest and most rambunctious little boy you ever knew. As great as that is, it is make his case that much more complicated, medically and financially.

All of Simon's tests have come back normal, so the doctors are at wits-end in regards to diagnosing the problem(s). This has actually made his treatment more difficult to procure as insurance has often declined coverage for services due to the fact that he does not have a diagnosis.

In May of 2015, our goals and focus for Simon changed rapidly. His first two years were entirely focused on feeding and thriving. And then more behavioral issues started. Simon lost his voice and stopped using the words he knew. He began to injure himself on a daily basis. He began having unexplained seizures. The next six months were a blur, as Simon was diagnosed with Autism Spectrum Disorder, Global Developmental Delay, Disruptive Behavior Disorder, seizures, lack of safety awareness, self-injurious behaviors and more. Simon continues to receive Speech Therapy, Occupational Therapy, Behavioral Therapy, Intensive Feeding Therapy and Physical Therapy (for his safety). Simon continues to receive his nourishment via gtube. Simon does not respond to his name. Simon rarely speaks. Simon's smiles are now rare, although no less illuminant. Simon's family continues to advocate for him and continue to seek answers from the medical community. Simon has specialists throughout Ohio and an amazing Intensive Feeding team in Indiana. Simon's need for a Safety Sleeper bed is simple - a safe place for him to sleep. Simon travels throughout the year to his Indiana team (six hours away), he is seeking medical opinions at a second hospital two hours away, and he travels to a Special Needs Camp (also six hours away).

Simon is an energetic, remarkable little person. His immense personality more than makes up for his minute stature. He is universally adored by people he encounters. His smiles light up a room. He's changing the world. And you can help him.

#growsimongrow

http://readysetparenthood.com/grow-simon-grow-feedingtubeawareness/

December 2014

 

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