little trooper

All of my favorite jeans have worn through in the knees. The tattered holes are not intentional, but rather the product of countless months teaching my son Calvin to crawl since he couldn’t do it on his own. The lesson was arduous, both of us down on all fours as I supported his torso with one hand and with the other moved each limb in sequence—right arm, left leg, left arm, right leg, and so on. We practiced hours each day from the moment when most kids learn to walk until he was just over two, at which time he was able to creep a few feet on his own.

Calvin was born six weeks prematurely with significant neurological deficits of unknown origin. Since before birth he has suffered the absence of a large portion of the white matter in his brain and, as a result, cerebral palsy, serious ocular and cerebral visual impairments, global hypotonia, hypothyroidism, slow gastric emptying and pervasive developmental delays.

Shortly after Calvin turned two he was diagnosed with epilepsy, which at the time I believed was a benign disorder for which you take a pill and everything is okay. I had no idea that it would eclipse all other adversity we had yet encountered. Calvin's first seizure was a four-minute grand mal seizure. He choked and stiffened, his face turned ashen-grey then blue and, with eyes bulging, he began to convulse. In a panic I called 911 and he was taken by ambulance to the emergency room. That was the first of innumerable visits there and to the NICU, the first of hundreds of seizures, the first of several intubations, of scores of drugs, dietary therapies, nauseating side effects and countless missed milestones.

Even with powerful medication, Calvin continued to suffer seizures that came in large clusters and at times developed into status epilepticus, a prolonged seizure that can often lead to death. During one forty-five minute seizure when he did not respond to a bevy of emergency medication, we were left helpless at his side, terrified for his life and powerless to do anything to help him.

The medicines cause horrible side effects, many of which Calvin already suffers as a result of his neurological condition. The drugs can also have lethal side effects leaving us to wonder if the treatment might be causing as much damage and risk as the epilepsy itself. None of this he understands. Sadly, Calvin cannot tell us what is hurting. Though he is nine, he cannot speak, cannot walk without assistance and remains in diapers. I have no doubt that things would be different if it were not for the epilepsy.

But Calvin is a little trooper. After each attack he has bounced back, at least part way. His tenacity is formidable. Despite this battle we wage, Calvin has enriched our lives beyond measure. He has taught us to delight in simple things, to have patience and to take nothing for granted. It is because of Calvin that we persevere.

Epilepsy affects 3 million Americans and their families, about 1 in 100 people. One in 26 Americans will be diagnosed with epilepsy at some point in their lifetimes.

Epilepsy kills 50,000 American’s annually—more than die from breast cancer—including children. Even so, it remains a most obscure, stigmatized, underestimated, misunderstood and grossly under-funded disorder.

Epilepsy is the second most common neurological condition affecting more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Over a third of people with epilepsy do not have their seizures fully controlled with medication.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s disease enjoys more than four times the amount of funding from Pharma, nearly three times the government funding and at least ten times the funding from private entities as compared with epilepsy.

People with epilepsy suffer debilitating, sometimes lethal, seizures and/or heinous side effects from medication and most must remain on these drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions.

The only hope to end this suffering is a cure. http://www.calvinscure.com

Calvin at 18 months, 6 months before actively crawling

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