Fam­ily fights Sun­flower Syn­drome

Record Observer - - Community - By KRIS­TIAN JAIME kjaime@ches­pub.com

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.

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