An Unusual First Four Years of LifePosted March 15th, 2012 by Felicia Willems
My son, Ethan, has had a very unusual first four years of life. Most of his first year was spent in and out of the hospital, receiving out-patient chemotherapy, three sclerotherapies, and intensive physical therapy - all due to a rare, non-cancerous (but very harmful) vascular tumor on his lower right leg. There was even talk of amputating his leg at the knee and/or trying some experimental adult chemotherapy. My husband was a full-time law student at the time, and even though I was the “breadwinner” for the family, I had to quit my job to care for my son during this unexpected and life-threatening illness. With my job, went our family’s insurance, and we were incredibly fortunate to be able to have Ethan qualify for Medicaid.
By his second year, the tumor had begun to go away and I am one of countless people who can honestly say that ”government-run healthcare” helped to save my son’s life. We spent our time trying to catch him up to a normal level of developmental with physical, occupational, and speech therapy, as well as occasional check-ups with his oncologist. He learned to walk (late of course, due to the pain caused by the tumor on his leg) and finally started being able to have what you might consider a normal daily life for an American baby.
His third year was full of delightful successes. He graduated from all of his therapies, visited his oncologist twice for follow-ups with nothing remarkable occurring, and started preschool. He was not just walking now, but running, jumping, skipping, and hopping, with no pain whatsoever, and if you couldn’t see that his right leg is a slightly different color than the left, you’d never know he had a rough start.
But after achieving all of these milestones, it was his fourth year, which was welcomingly uneventful as far as his health goes, that will likely have the most long-lasting effect on my son’s life. My son was born with this illness. His tiny body fought so hard to get through it. He experienced unimaginable pain and suffering, spent day after day at the hospital, and in the end was able to overcome all the adversity that was sent his way. And even though he had proven, more than most people ever have to, that he’s strong and will fight to be healthy, my son was facing a life-time of turmoil with regard to getting health insurance coverage.
Anyone who has had a catastrophic illness knows how hard it can be to get or maintain health insurance coverage even once that illness is gone. As of September 23, 2010, that is no longer the case for Ethan. The Affordable Care Act ensures that health plans can no longer limit or deny benefits or deny coverage for my son because of his “pre-existing condition”. Which is why when we visited his oncologist in October, it was an especially emotional day. We were told that Ethan would no longer need follow-ups. We were told that we were done with the doctor visits and the MRIs. He was given a clean bill-of-health for the first time in his life. We could not have been able to officially close the book on this chapter of his life without the Affordable Care Act and that is why 2010 was the best year of my son’s life.