Joel's Journey

Ever since Joel Couch was an infant he has faced multiple physical struggles.  Joel suffered from seizures since he was an infant and could not drink his formula without aspirating liquids.  This resulted in multiple episodes of pnuemonia.  As a result, he had to receive all of his nutrition from a feeding tube.   In 2014 after the Couch's moved toTulsa, Oklahoma, Joel participated in extensive genetic testing to determine the cause of his physical challenges. He was diagnosed with a rare mutation that has only recently been given a name:  White Sutton Syndrome.  Joe has had numerous hospitalizations recently due to his stomach shutting down.  One of the issues with Joel's syndrome is that his stomach cannot process sugars and carbs.  This requires a very expensive medication and close monitoring of the amount of sugars and carbs he receives.  Through feeding therapy, Joel can now eat foods and drink thickened liquids.  But he continues to require a specialized formula that is low in sugars and carbs.  Even with close monitoring, Joel's digestive system will shut down.  His medications and formula are very expensive and insurance will not pay for these at times.  While insurance has recently approved his medication, they are anticipating that it will not be covered in the future.  In addition, future hospitalizations are anticipated.   Those of you who know Joel and his family, know how special this family is.  Mandy and Josh invest so much of themselves not only in Joel but their other two children.  Like any parent they have dreams and goals for Joel.  One of their dreams is to set a up a sensory room in their house for Joel due to his sensory integration issues.  But sensory equipment costs money and with his other medical needs this dream is on hold.  In addition, it is their desire to to seek additional medical help for Joel in Texas where there are physicians that are currently working with children that have the same syndrome that Joel has.  Again, money is needed to pursue this dream.  It is also their desire to set up a trust for Joel's future medical needs.  I had the privilege of being one of Joel's therapists when they moved to Tulsa,  He has won my heart and the heart of so many others.  While Joel has his challenges, he is a happy, funny, loving little boy.  Funding received from here will go towards his medical needs and bills, a sensory room, seeking medical help from experts in Texas who are working to treat this rare syndrome and setting up a trust for Joel for his future needs.  The Couches are overwhelmed by the thought of people wanting to give towards Joel's Journey.