My son is joining the disability March to represent the children of the US who will be adversely affected by Republican plans to repeal Obamacare and put access to a free and appropriate public education in jeopardy.  My son has a rare and complex medical condition and has already surpassed the lifetime benefit cap that was in place for our insurance policy before ACA became law.  Because our family makes a moderate income, Walter doesn’t qualify for medicaid or SSI/Disability.  There is no readily available income waiver program for health insurance or health care option for medically fragile children in my state, so if Obamacare is repealed without a replacement, my son risks becoming uninsured and uninsurable due to exceding the lifetime cap.  At this point in time, we truly don’t know what we would do.  In addition, Walter has recently started attending a special education preschool class that is provided through the public school system.  This has been an amazing gift for him, as he has quickly become more social, outgoing, and is making progress in “academics” that I did not see coming.  He is flourishing on the public school environment in every way and we feel blessed to live in a country that would offer him this chance to experience the right of passage that is going to school along side his typical peers.  We are marching to protect his access to the health care that he needs not only to stay alive, but to have his best possible life.  We are fighting to protect his access to a free and appropriate public education.  This boy is sweet as pie and tough as nails, and he deserves a seat at the table of our nation.  He could be the poster child for the immensely positive impact that access to health care and special education can have on the life of a child.  For this, we march!!

Walter is a sweet little 3 year old boy who was born with a rare condition that caused several birth defects along the midline of his body.  Most critically, he was born with a large gap in his esophagus, so large that he was essentially born without an esophagus.  He spent his first 10 months of life in the hospital and 4 more months before his second birthday.  Today, he is THRIVING and HAPPY thanks to having unrestricted access to top notch medical care and guaranteed access to Early Intervention Therapy Services that have enabled him to strive for his best life possible.