$154,570.10

It is hard to believe that we are just over 2 years into Ari’s journey. His fight with epilepsy has been challenging - certainly something we never anticipated when we became parents to a beautiful and healthy baby boy five years ago. Thank you to everyone for taking the time to learn his story - 

Just before Ari’s third birthday, he had his first seizure. I was standing in the kitchen of our apartment holding Ari’s baby brother when it happened. That first incident is both a blur and painfully clear in my memory, the EMTs and hospital visit, and our frantic search to figure out what was going on inside Ari’s little brain. We were fortunate to find Dr. Devinsky quickly, who became our captain as we navigated this new world. 

The next few months were tricky. Ari was hospitalized multiple times, sometimes for weeks at a time, while we struggled for seizure control. He was diagnosed with generalized epilepsy, then drug resistant epilepsy. He was put on 1, then 2, then 3 different medications, before adding a ketogenic diet. At times, Ari was having 10 seizures a day. Other times, he would go days without seizures only to struggle to stay awake, walk, or talk from the high levels of medication in his tiny body. For us, there was so much unknown, and we constantly struggled to stay present and get Ari through each day, while also fearing for his future.

I’ve had the misfortune of learning early on in my parenting experience that you cannot protect your child from everything. We can’t do his frequent blood tests for him. We can’t wear his EEGs, or take his medication, and changing my diet won’t help him. We can’t control if or when he has another seizure. I can’t take away his pain. The loss of control as a mom of a child with a serious medical condition can be truly agonizing. 

But here is something we can control - we can fight, with Ari, for Ari, by raising money and awareness for epilepsy through FACES, a wonderful organization that is dedicated to developing new treatments and finding a cure.

FACES supports Ari and our family every day through the fully funded keto clinic. It is changing the lives of people with epilepsy as new technologies are constantly developed targeting groundbreaking treatments for seizures. With the help of those who care, our hope is that one day, those like Ari won’t have to live with this debilitating condition. 

And we couldn’t be happier to share that today, thanks to the amazing team at NYU, Ari is a happy, thriving, seizure free 5 year-old-boy. Yes, he still takes daily medication and continues to be on a restrictive keto diet. But he also attends school, has friends, goes on vacations, and fights with his little brother. As he gets on the school bus each morning, yelling “bye mommy!” with the biggest smile on his face, we breathe a sigh of gratitude knowing that each day is not given, it’s a blessing. We know that our fight is not over, but we will never undervalue what it means to have a healthy child.

With that said, we want to thank our incredible community. To Dr. Devinsky, NYU, and the whole FACES organization, you are our heroes. The work you do constantly saves and changes the lives of many. To our friends and family who continue to show up - we are beyond moved by the level of support and love we feel. And to Ari - our beautiful tiny warrior who constantly endures, accepting realities and responsibilities most adults would shy away from. We will never stop fighting for you. Whether you know him well or not, every person who donates to our cause, or simply takes the time to hear us is making a difference in the life of our little boy. Thank you.