LONGMEADOW — The loss of a child is devastating, but a family in Longmeadow has found new purpose in the death of their son and brother: improving the quality of life for children with a rare form of epilepsy.
Elisa Goldberg said her son, Max Goldberg, began to develop symptoms of Sunflower syndrome as a child.
His eyes would roll back, and he would have a seizure when near sunlight. When he was 11 years old, she said he began rapidly waving his hand in front of his face during seizures, “a telltale sign of Sunflower syndrome,” Elisa said.
Sunflower syndrome is a form of photosensitive epilepsy that starts in childhood. Children with this disorder are often drawn to bright lights, which then triggers an epileptic seizure, during which the patient involuntarily waves their hand in front of their face. Seizures can occur up to 600 times per day. A paper by doctors Kennedy Geenen, Sandip Patel and Elizabeth Thiele found that children are often misdiagnosed with other forms of epilepsy, Tourette’s syndrome or obsessive-compulsive disorder.
When he was in high school, Max and his father, Jeffrey Goldberg, flew to St. Louis, Missouri, to meet with optometrist Dr. Steven Cantrell, who was developing contact lenses to help people with Sunflower syndrome and other photosensitive epilepsies. The Zeiss Z1 cobalt blue lenses, developed in Italy, filter the wavelengths of light that cause seizures. The goal of the lenses is to reduce seizures and improve the quality of life for people with these disorders.
Max had used blue-lensed glasses in the past with a degree of success, but Elisa said the contacts filled Max with hope. She said the two things Max wanted most in life were to “be normal” and learn to drive, as his epilepsy had made driving impossible. After trying the contact lenses, Elisa said Max called his grandmother and told her he was confident he would be able to drive.
In 2021, Max died of suicide when he was in his first year of college. Elisa said her son was isolated due to the restrictions of COVID-19 and had been drinking, which can negatively impact people with certain forms of epilepsy. Goldberg said she believes that her son’s death was accidental, as he had expressed hope for his epilepsy and his life in the days before.
Cantrell was so affected by the work he did with Max and the news of his death, that he renamed the lenses, the “Max Lens.”
After Max’s death, Elisa and her husband sent the unopened spare pair of lenses back to Cantrell. “We didn’t know what else to do with them,” Elisa said. As it happened, a 12-year-old girl had begun having seizures. The lenses are a newly developed and specialized medical device, and as such, they are expensive at $1,800 for a single pair and $500 for a spare. The girl’s family could not afford the Max Lens, but Cantrell was able to give her the returned pair of lenses.
Elisa said that moment gave purpose to her, her husband and son, Joshua Goldberg. The family created the E2E Foundation, which stands for “end to epilepsy.” Its mission is to help provide the Max Lens to families who could not otherwise afford the assistive medical device. The family, who operate the foundation on their own, has organized two successful fundraisers. On Nov. 1, the foundation is slated to host its third fundraiser, a night of dueling pianos at the Elks Lodge in Springfield.
So far, the money raised by the foundation has mostly been sourced from the Elisa’s family and friends, but this is not sustainable, Elisa said. The E2E Foundation has begun actively pursuing grants, sponsorships and donations.
Elisa hopes making the Max Lens affordable to more children will help children with Sunflower syndrome live without the challenges her son experienced, including stunted growth, physical damage to the brain and social stigma. “He was just this funny, little guy in glasses” who did not want to be hindered by his disorder. “If we can help other people with Sunflower syndrome — I don’t want to say it will have been worth it, because it won’t — it will give us meaning,” she said.
In the meantime, Elisa said, Cantrell will soon be moving to introduce the Max Lens to the market in the United States. While he is working on widespread usage of the assistive device, other doctors are working to identify and address the root causes of Sunflower syndrome.
Doctors at Mass General Brigham for Children are exploring the possibility of a genetic component to Sunflower Syndrome. The hospital’s Pediatric Epilepsy Program is also working to characterize the clinical features and electroencephalogram patterns of children with Sunflower syndrome.
More information about The Max Lens and the E2E Foundation can be found at e2efoundation.com. A guide to Sunflower syndrome for families, patients and schools is available at massgeneral.org/assets/mgh/pdf/neurology/sunflower-syndrome-guide.pdf.
