Zak the Mighty

Zak the Mighty Needs Your Help!

Hello family, friends, and well-wishers! We set up this GoFundMe to help raise money for our son Zachary's medical care. His treatments for epilepsy have us paying  over a thousand dollars a month  out of pocket 
even with excellent medical insurance, an amount that will increase as he grows. Please read about Zak's journey below and help if you can. 

Zak the Mighty Has a Rough Start

Zak started life by spending a month in Stony Brook University Hospital's NICU in 2011 with seizures, ataxic cerebral palsy, thrombocytopenia, cholestasis, hearing loss, renal failure, and liver failure due to Hypoxic Ischemic Encephalopathy. In simpler terms, he had multiple strokes when he was born. His prognosis was not good, but with the help of all of our family and friends Zak the Mighty fought on!

Zak the Mighty Gets Mightier

We immediately started getting some help through New York State's Early Intervention program. Even though Zak had many health issues, he powered through Physical Therapy, Special Education, and Occupational Therapy. All of this before he was 3 months old! Over the next three years some of his heath issues were resolved, some persisted, and we discovered a few new ones such as Sensory Processing Disorder and ADHD. Zak the Mighty did not give up.

Zak the Mighty Goes to School

In 2014, Zak began his educational career at the New Interdisciplinary School in  Yaphank, NY. We cannot say enough about how incredible this school is, and the amazing impact it had on our entire family. From 2014 until late 2015 we felt that medically things had stabilized somewhat. Sure, there were a lot of developmental and physical issues to deal with, most of them exhausting, but we thought we had a handle on everything. In November of 2015, Zak the Mighty faced his greatest challenge.

Zak the Mighty's Fight

Zak started having frequent seizures in November of 2015. Absence type, Drop type, and Complex seizures. Sometimes many times per day. We went through MRIs, 24-hour EEGs, and ER visits: the diagnosis was Epilepsy. Zak was put on several different medications, and while the frequency of the seizures decreased, they still kept happening. In addition, the side effects of his new medications took a huge toll: weight gain, sleeplessness, increased aggression, and cognitive impact. Our Zak disappeared in a fog of seizures and medication.

Zak started Kindergarten in September of 2016 and had an incredibly difficult time due to his daily seizures and medications. We kept working with Zak's neurologists and recently had a breakthrough with his treatment!

Zak the Mighty's Victory over Epilepsy

Zak started CBD oil therapy via the New York State Compassionate Care Program in December of 2016 as one of the youngest patients receiving medical marijuana in the state. The results were immediate: on his initial dosage level of CBD oil we saw a 50% reduction in seizures. His doctor doubled his dosage and we haven't seen a seizure in five weeks. That's right, no absence, drop, or complex seizures for over a month.

This is where the financial problem comes in.

This is currently one month's supply:

That's $910 of CBD oil. Currently, due to cannabis being a Schedule I drug, medical insurance will not cover it. We cannot claim it as a deduction on our taxes (federal or state).  On top of that, we have to drive an hour each way to get it, and you can only pay in cash.

Totally worth it though. It's saving Zak's life. Since he's been on CBD oil, we and his teachers have seen his entire personality has changed. We have our Zak back.

His doctor's plan is to increase his dosage again while we taper down on some of his other anti-seizure medications, in particular the benzodiazepines that have had the most affect on his well-being. That would mean a doubling of our cost shortly to $1820 a month.  That's on top of $300  in copayments and compunding fees for all of his other medications. That's about $70/day in expenses which is a tremendous financial burden for any family to bear. We've set our fundraising goal so we can guarantee being able to continue his life-changing CBD oil treatment for the next year.

Please help if you can. Thank you for sharing in Zak the Mighty's journey!

Love, 

Katherine, Denise, Zachary, and Aaron