"IN AMERICA, EPILEPSY IS AS COMMON AS BREAST CANCER AND TAKES AS MANY LIVES"
Seven years ago my life was forever changed with four words – “your son has Epilepsy”. Every day since then has been a combination of tears, questions, frustrations, education, successes and setbacks – in no particular order; learning that Epilepsy is not “just seizures”…there are development delays, ER visits, physical limitations, endless tests, restrictive diets, hospital stays, a steady stream of medications. So many nights I have sat next to his bed and watched him sleep, wondering how his brain and his little body handles it all. Yet, by the grace of God, my son Michael only sees love and happiness and laughter, and takes everything that he goes through with the smile of someone wise beyond their years.
Michael’s epilepsy is in fact a syndrome called Lennox-Gastaut, a rare childhood epilepsy; it is refractory and severe. It has many characterizations and impacts his overall health. While LGS does its very best to limit Michael, he fights back every day. He will ride and swim to exhaustion. He will laugh until he can’t catch his breath as I drag him through the snow on a sled. He will shoot basket after basket on the court, and spend hours at the driving range. He will jump from couches with his cousin to pretend they are super heroes fighting crime and then just as quickly wrestle with him to the ground. He torments the dogs and begs them to chase him. He loves to eat and will bargain for his favorite restaurants. He loves trains and trucks, and he would give anything to be on a motorcycle! He may not be able to do what every 12 year old boy is able to, but all 60 pounds of him are determined to try. So while there are many days when Epilepsy wins, there is never a day Michael lets it win without a fight.
Statistically, 70% of children will outgrow epilepsy. Unfortunately, Michael is not one of those lucky ones. Now 12 years old, we know we have a long road ahead of us. Just like any person watching someone they love go through hurt or illness, there are days I feel angry, sad, scared, helpless, exhausted, alone…I struggle, break down and get up. I know the best chance Michael has is for me – for us – to fight. So we will continue to fight for research, for education and for awareness. NYU’s Pediatric Neurological team, and more specifically Dr Orrin Devinsky and Dr Judith Bluvstein, have been our haven, our place of hope and our source of knowledge. Every single doctor, nurse, therapist and aide we have come in contact with has done everything they can to work to get Michael seizure free. We still work at it today. Their goal is a cure. FACES (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center has the same mission - to find a cure for Epilepsy - via cutting-edge research and studies, and they are tirelessly working at it every day also. Their mission is that one day there will be a cure, and every effort is geared toward that goal.
I used to think running a marathon would be impossible, that it would be too much of a challenge and I would not be able to do it. But living with Michael and watching all the challenges he faces and overcomes on a daily basis, I am inspired by his strength, his fortitude and his spirit to run the NYC Marathon this November 1st. I will be running to support Team FACES at NYU. And every time I feel a run is too hard, the miles too long, I will think of Michael and all the children and adults who cannot run, and I will run on for them. I used to believe I ran for my survival, but now I understand I am given the ability to run for theirs.
I am asking that you support Team FACES in honor of Michael to give hope to him and all those afflicted with Epilepsy, along with every person that loves them, that someday they may all have what every single one of them wish for – a seizure free life. Thank you for your love and support.
To learn more about FACES and their goal, visit their website at http://faces.med.nyu.edu/
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