By Jaime Bailey (Eli’s mom)

[NFOSD note – Jaime shares the 5 most helpful tips for families experiencing a similar experience at the bottom of this article.]

The NFOSD shared my son’s story with you recently; I thought it might be helpful to others if I shared my story.  My beautiful, energetic, happy, 2 year old baby boy, the joy of our life, has severe dysphagia.  I know there are lots of other mothers out there just like me.  We are not alone!  Raising the awareness of swallowing disorders is a small step that can help millions.

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This story is about Eli, a bright, energetic, angel of a boy ready to take on the world. Unfortunately, Eli has been suffering from dysphagia his entire life. The rigors of set feeding schedules, uncomfortable and strenuous nutrition intake, social isolation, and emotional heartache caused by having a son with dysphagia have put a tremendous strain on his entire family and their extended social and employment infrastructure.

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In 2003 I had a divorce, brain surgery and resulting DYSPHAGIA (inability or difficulty swallowing,) for six years I was fed by a stomach-tube ONLY! Many of us are not thankful for the intricate and instantaneous processes our body routinely performs because unless you are unusually grateful by nature, you don’t spend your waking moments giving thanks for your waking moments. You’re too busy working, doing the laundry, fighting with your spouse and wondering when you’re going to have sex again.

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