Hello! We are asking the community for help. Our wonderful son Ethan Greenwood has Sunflower syndrome a rare form of Epilepsy. Help us get Ethan to Boston MA to seek treatment from the Boston team who is currently leading a trial on Sunflower syndrome on a new medication that could potentially help our son.
            Ethan is a bright young man, he is in first grade. Ethan is 7 years old, and loves life! He never lets his illness get the best of him. He loves sports, and his friends, and school, and LOVES being outside
             Ethan has hundreds and hundreds of hand waving seizures daily. These seizures last 1-3 seconds during that time Ethan loses consciousness . he is having hundreds daily, making outdoor activities very challenging. Ethan wears dark blue lens sunglasses to try and help reduce seizure activity, as of now they are not working as well as we had hoped.
              Our goal is to get Ethan out to Boston to see Doctor Elizabeth Thiele who is running the trial on Sunflower syndrome. We hope to seek other treatment options as well as possibly getting Ethan in a clinical trial.  In order to get out there I am asking for help with Medical expenses, Airfare and hotel costs. 

https://www.massgeneral.org/children/sunflower-syndrome This link will take you to the Boston General website giving information on Sunflower syndrome. as well as information on their team and what they offer at Boston General.

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