who cares?

This morning I read about a five-month-old baby girl, Avery, who was recently diagnosed with a genetic disorder called spinal muscular atrophy (SMA.) She has been given only eighteen months to live. Her father started a blog, written from Avery’s perspective, and in less than a month it has gone viral and racked up over a million page hits (it has doubled in the course of a few hours) from sympathetic readers. Her Facebook page has over 60,000 likes.

SMA affects about one in 6000 US births, which means that about 20,000 American children have it, 1000 being stricken with it each passing year. It is a terrible reality that no parent or child should have to face, and Avery’s parents are telling the world ... and the world is listening.

My eight-year-old son Calvin has suffered from epilepsy for over six years now. In the US epilepsy afflicts about 300,000 children and as many as 3 million Americans and their families. That’s one in one hundred people. It affects more people than cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease combined. Epilepsy and related deaths such as drowning, head injuries and burns, account for an estimated 50,000 deaths annually, which is more than from breast cancer. People with epilepsy who survive the scourge are destined to a life of seizures and/or terrible side effects, stigma, job loss, loss of independence, emotional and financial burden, developmental delays and discrimination, yet somehow so few know—or seem to care.

I feel for Avery, for her parents and for what they must have to cope with knowing on a daily basis ... that their precious child has such a brief period of time with them on this earth. At the same time my blood is boiling as I write this wondering WHO CARES about epilepsy when it is such a major health problem that garners so little attention ... even as children are dying? What has to happen to arouse people's compassion? How many have to suffer to rally the masses? Who needs to die to make this urgent message go viral? I hope it won't have to be our own little boy Calvin.

Please share Calvin’s Story and help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time.

Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

1 comment:

  1. I feel you. Epilepsy does not get anywhere near the attention that it deserves. This hit me over the head today when I was working on some research and came across this stat: Amyotrophic Lateral Sclerosis (ALS) causes fewer DALY’s (Disability-adjusted life years) than epilepsy but receives 61.1 times the federal funding that epilepsy does. 'Makes me SO angry. I think the key for the epilepsy movement is to make the gross underappreciation of the disease more transparent and then get collectively angry. It's just so unfair!