We established the E2E Foundation, Inc. in memory of our son Max, who had a rare form of epilepsy.
Patients with this rare condition, known as Photosensitive Epilepsy or Sunflower Syndrome, experience frequent seizures due to exposure to certain visual stimuli, such as the lights on a computer screen, sunlight, flashing lights, even lights in certain stores. Otherwise, they are healthy individuals. Episodes begin before age 10, impacting safety and the ability to learn.
Max was diagnosed at age 8 and through the years, he was prescribed medication to help with the seizures, but anticonvulsant medications didn’t control his seizure activity. Sunglasses, hats, avoiding outdoor activity, dim lights, covering indoor windows and tinted car glass were commonly prescribed solutions that worked to a limited extent.
Because of this type of seizure disorder, patients are often unable to participate in school and social activities, or get a job, greatly diminishing their quality of life. Patients are often bullied, have poor self-esteem and suffer from anxiety. For our son, all of these happened in his young life and resulted in frequent changing of public schools until finally we were able to get Max into the most positive school environments, the Eagle Hill School, Hardwick, Mass and Mitchell College, New London, CT.
All Max wanted was to be like other kids, and especially as he entered his teenage years, getting his driver’s license was his goal. Through a chance encounter with Dr. Elizabeth Thiele (Mass General Hospital), we were introduced to Dr. Steven Cantrell, a St. Louis, Missouri optometrist. Dr. Cantrell was developing a remarkable type of contacts, based on the technology behind the blue Zeiss lens. Dr. Cantrell was also the parent of a special needs child and knew what we had been going through. “Our son Ryan was developmentally disabled and had so many challenges but I recognized that his whole being was there. The parts might not be working like we want but he was fully there,” Dr. Cantrell wrote to us.
Max and his dad flew out to meet Dr. Cantrell at his clinic in 2020 to be fitted with the contacts; the lenses that held the opportunity to change Max’s life. Max was able to be on the Mitchell College lacrosse team and was looking forward to a job at Six Flags Amusement Park, and of course, obtaining the all- important driver’s license.
The contacts helped Max immeasurably, but their cost is more than some families can afford. We established our nonprofit foundation to assist families to obtain the contacts, which Dr. Cantrell has re-named “The Max Lens” in honor of Max David Goldberg, who passed away on Feb. 18, 2021, just four days after his 21st birthday.
To give someone their independence and a quality of life they have not had due to Sunflower Syndrome is the root of our mission, inspired by our son, the strongest, most courageous person we have ever known.
If we can help just one person with the Max Lens, we will have fulfilled Max’s hope for the future and honor the 21 years he fought so hard for!
