CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

This article was originally published in Los Angeles Parent Magazine, and was awarded third place in their Fathers Write Too Competition.

In order to show endurance, strength and stamina, and maybe to prove something to themselves or others, people willingly compete in a variety of athletic challenges, such as marathons. The participants believe Alex that these races are an ultimate test of not just physical competence, but also of dedication and self-control.

The distance of a marathon is 26.21876 miles and is said to put the participant to the ultimate test and often times pushes one to his or her breaking point – some contestants do not survive. Indeed, the runner of the first marathon, Philippines, ran from Marathon to Athens to announce a victory over the Persians and then, upon arrival, immediately keeled over and died.

While this may seem tough, many people are involved in more significant challenges every day. My ultimate race, for example, happened to be a bit farther than marathon distance – it was 27 miles. I had not trained for the race and initially did not have the strength and endurance required to make it to the finish line. My challenge was not a race in a traditional sense. There was no warming up, no starting pistol, no time clock and certainly no volunteers handing out water and snacks.

Rather, my 27-mile test was the distance from my house to Children’s Hospital Los Angeles, where my daughter stayed in the Neonatal Intensive Care Unit (NICU), on the verge of death, for approximately 90 days. My race was not about coming in first place. The sole focus was reaching the finish line.

To most, traveling 27 miles in a car is no great accomplishment. To me these daily trips, which were filled with dread and immeasurable sadness and anxiety, could not have been harder if I was Alexan early prospector traveling west over the Rocky Mountains. Like those of the early prospectors, my journey was lengthy, slow and costly.

Indeed, this journey was speckled with long periods of failure and a few moments of excitement and hope. Often times I was alone in strange and foreign territory and, for lack of a better word, terrified. Terrified of the gravity of decisions being made, terrified about the life that would follow, and terrified of the inability to cope with the bends in the course that would follow.

While my “race” and those of various marathon runners may seem tough, they greatly pale in comparison to the real challenge that children who have epilepsy and other disabilities face every second of every day of their lives. Children who have a disability are on a constant treadmill. While they may have slight breaks, they are forever in a battle for their very survival with conditions that may prevent them from reaching their maximum potential. They face an enemy force of great strength and size, which our young children, and often society, are unprepared to fight. Further, the children are not just fighting the disability itself, but also the ignorance and prejudice that goes along with the lack of information. In fact, sometimes, they need to fight their school districts just to ensure that they receive an appropriate education that allows them to maximize their potential.

In order to claim victory in this race, it is essential to have proper resources, equipment and awareness. Unfortunately, epilepsy research (and research regarding other ailments) is woefully underfunded. Many of our hospitals do not have the appropriate specialists with the proper training and the public at large is not well informed about specific disabilities and how those with these conditions may be productive members of society in a variety of ways.

The battle against childhood diseases does not need to be a full-time “Trail of Tears” to help ensure that the end destination is a good one. It is essential that people assist in raising funds and awareness. There are many ways to do this. There are many opportunities to assist in joining the fight; in fact, your assistance can be as simple as keeping an open mind. Hopefully, you can take the time to help those in need triumph against such powerful enemies.

CURE epilepsy

Brad, Alex’s Dad

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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