Family fights Sunflower Syndrome
STEVENSVILLE — For 14 yearold Delaney Lynn, of Bay City in Stevensville, entering freshman year at Kent Island High School comes with more than the usual butterflies, it includes confronting the rare Sunflower Syndrome.
Sunflower Syndrome is a rare, epileptic disorder characterized by highly stereotyped seizures. During these seizures, individuals turn toward a bright light while simultaneously waving one hand in front of their eyes. This unique behavior causes reflex seizures with abrupt lapses in consciousness.
The condition is so rare that only an estimated 1,300 cases are diagnosed worldwide. As a result, the Lynn family struggled to find any research on the condition until they found Delaney’s current neurologist and pioneer in the study of Sunflower Syndrome, Dr. Elizabeth Thiele of Massachusetts General Hospital in Boston.
“She was officially diagnosed at 3 years old with myclonic epilepsy,” said Lori Lynn, Delaney’s mother. “She had it since birth and with medication, it subsided. But it brought out another type of seizure that was [triggered] by photosensitivity. Kids with Sunflower Syndrome are drawn towards the light regardless if it’s sunlight or even artificial sources.”
Their search for answers started on the internet as they tried finding anything about the little-known condition. Before long, trips to neurologists in Baltimore and then to the famed Johns Hopkins Hospital yielded only limited data.
Even among some of the top epilepsy doctors in the country, Sunflower Syndrome was unknown. The only plan was traditional approaches to treating epilepsy as a whole, yet that left little direction for the Lynn family.
“We started scouring the internet looking for anything about Sunflower Syndrome,” Lynn continued. “I was given an article by her doctor and there was a very small section about it and I searched it and only got three hits with one of them being a Facebook group with 15 parents. After conversing with them, one of them found a doctor in Boston that had made it her research focus.”
After a year under the care of Dr. Thiele, Delaney has availed herself to a team of specialists that have made her diagnosis their primary focus. With an estimated 15 patients with the same condition, fundraising and research efforts into Sunflower Syndrome have escalated.
Defining normalcy for the Lynn family is not easy. With every family outing, Larry and Lori Lynn, along with Darcy, Delaney’s 12 year-old sister, are constantly vigilant. Even team sports can be a dubious proposition as Delaney was unable to play soccer as child because of the sunlight.
Even certain films, like the newly released “Incredibles 2” may pose a risk of seizures prompting a petition on change.org, originating in Stevensville, to place an epilepsy warning on the Blu-Ray release.
But like any teenager, the independence that comes with starting high school is also a worry for her parents. Striking the delicate balance between what is safe and what is “normal” for their daughter is never out of mind.
The adage that knowledge is power is not wasted on Delaney who routinely does research on the latest advancements on treating Sunflower Syndrome. She has even developed a PowerPoint presentation with her findings.
The aspiring fashion designer, who is enamored with style of icon “Coco” Chanel, is well aware that things will not be easy as she transitions to high school and beyond. Even she has concerns.
“When I have my absence seizures, I don’t have any warning,” said Delaney. “Since I haven’t had a grand mal seizure in close to five years, I don’t remember what its like. I don’t get nauseous, but I feel like the world is at a standstill and I black out instantly.”
The regimen of exams and blood draws, along with 24-hour hospital visits to conduct periodic electroencephalogram (EEG) tests, only seems to strengthen the Lynn’s family resolve in finding more progressive treatments.
The milestone for any teen is the freedom of a driver’s license. For Delaney, that means working closely with her doctor to adjust her dosage of three daily medications to control her condition as best she can.
According to her parents, the effort to not disrupt the daily flow of life for her and her sister has paid off and even brought the family closer together. Even Darcy is well aware of the reality seizures present for Delaney.
That is just the type of support any child needs as they embark on a change as comprehensive as high school.
“It’s going to be rough having to hear about [other kids] getting their learner’s permit and starting to drive, but I know that many people will just go about theirs lives. I will be different since high school gets a little more dramatic,” Delaney said.
Always the self-starter, she already hopes to begin a fashion club and continue pursuing dance.
“I couldn’t ask for better parents because they do anything to help me and it’s amazing. My sister and I are very close and she’s very aware of what I’m going through,” Delaney said.
More information on Sunflower Syndrome and treatment for the rare diagnosis, visit www.massgeneral.org/ neurology/education/sun flower_syndrome.aspx.
Delaney Lynn, far right, is pictured with her parents, Larry and Lori Lynn, and younger sister Darcy Lynn.
Delaney Lynn participates in a recent charitable walk against epilepsy in Washington, D.C., with her family.