Summer 2021 Publication

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in Lyon Village outside of WashingtonD.C. to buy some cookies. I remembertelling my brother that “I could smell thecookies already” even though we were afew blocks away from the store. Mybrother, likely having an absence spasm,did not respond to my comment andsimply stood still. My friends sometimesignored me, so I figured that my brotherhad just done the same. At the time, mybrother appeared the same as everyoneelse around him. His handwriting washorrible, and my handwriting washorrible. My brother had no more thanfive or six friends, and I had no morethan five or six friends. My brother rodethe bus to and from school, and I rode thebus to and from school. My brother’sartwork was simple and abstract, and myartwork was simple and abstract.Figure 1: My Childhood Artwork vs. My Brother’sChildhood ArtworkNote. This is a comparison between my artwork (right) andmy brother’s artwork (left) that we both created at age 10.However, as we aged, the differencesbetween my brother and I emerged. Mostdiffering features emerged slowly, but themost obvious was performance in school.I had stayed consistent through most ofmy middle school and high school career,performing well. My brother completedhis early education well, but his gradesand performance declined in middleschool and high school. My family beganto support him in school, helping himcomplete homework and study for tests.Our physical differences arrived next. Mybrother developed spinal issues, as heoften hunches over when sitting at hisdesk or in his room. By high school, mybrother and I were about the same heighteven though he was taller most of his life.Today, I stand about 3 inches taller thanmy brother. Perhaps the most obvious aresimple everyday capabilities. I am in theprocess of earning my drivers license,while my brother has never driven a car.My brother has to be monitored while hedoes his homework, while I do myhomework on my own. My brother plansto stay an extra year in high school whileI plan to go straight to college.July 26, 2018, Dallas, Texas. My mother,brother, and I exited a taxi and enteredthe Hilton Anatole. The lobby containedseveral banners, each reading “TSCGlobal Conference.” inblue, orange, and greenletters. We arrivedaround 7:00 pm justbefore sunset and most ofthe conference'sactivities were over. Wetook an elevator up toour hotel room and saw afew parents watchingtheir children run aroundin the hallway. At 8:00,we took an elevator downto the lobby floor andwalked over to a largeballroom for dinner. TheTSC Alliance prepared alarge buffet for theconference attendees andassigned each attendee toa table around the roomwith random others. I put my plate downlast out of those seated at my table: all ofwhom appeared to be adults withresearch experience. I greeted them witha smile, and they invited me to sit withthem. Then someone started the usualicebreaker: what is your name and whyare you here? My tablemates discussedtheir research responsibilities, most ofwhich I did not understand. When it wasmy turn to introduce myself, I explainedthat I am the sibling of a TSC patient,here to learn more about the disease.The woman next to me, probably in hersixties, discussed herself. I expected moreresearch jargon, but instead sheexplained that her son had had TSC foralmost 25 years. She described her son’schildhood, his experience with bullying,his struggles with college and career. Shetalked about kidney scans, endlessappointments, and rising bills. Thesechallenges had clearly worn down on thewoman, who spoke in a quiet andpessimistic voice. Everyone else at thetable looked down to reflect on theirchallenges with the disease. Theresearchers may have thought about theTSC patients they had met in the past,but I took an honest look at my brother.I tried to imagine my brother a decadeolder. I couldn’t do it. My family hadspent so much time on my brother and Icouldn’t think of him becoming an adult.The woman at my table explained thather son still lived with her. But I couldnot think of my brother living with myparents either: “he is capable of living onhis own, isn’t he?”Since that woman turned my eyes on mybrother’s future, it has becomeincreasingly hazy. My brother can workat Safeway, but my mother and I stillneed to guide him. My brother can still goto high school but my family still needsto help him study. My brother lies righton the edge of independence."Everyone else at the tablelooked down to reflect on theirchallenges with the disease.The researchers may havethought about the TSC patientsthey had met in the past, but Itook an honest look at mybrother. I tried to imagine mybrother a decade older. Icouldn’t do it. "16| SUMMER 2021
Figure 2: My My Teenage Artwork vs. My Brother’s Teenage ArtworkNote: I created the landscape on the left in freshman year of high school and the painting on the right wascreated by my brother in sophomore year of high school.ReferencesABOUT THE AUTHOR[1] National Center for BiotechnologyInformation. (2021). TSC1 TSCcomplex subunit 1 [Homo sapiens(human)] - Gene - NCBI. Nih.gov.https://www.ncbi.nlm.nih.gov/gene?Db=gene&Cmd=ShowDetailView&TermToSearch=7248.[2] MedlinePlus Genetics. (2011).Tuberous sclerosis complex:MedlinePlus Genetics.Medlineplus.gov.https://medlineplus.gov/genetics/condition/tuberous-sclerosis-complex/.[3] Overwater, I., Rietman, A., vanEeghen, A., & de Wit, M. (2019).Everolimus for the treatment ofrefractory seizures associated withtuberous sclerosis complex (TSC):current perspectives. Therapeutics andClinical Risk Management, Volume15,951–955.https://doi.org/10.2147/tcrm.s145630.[4] Office of Communications and PublicLiaison, National Institute of NeurologicalDisorders and Stroke. (2017). TuberousSclerosis Complex (TSC). EpilepsyFoundation.https://www.epilepsy.com/learn/epilepsy-due-specific-causes/structural-causesepilepsy/specific-structuralepilepsies/tuberous-sclerosis-complextsc.[5] Office of Communications and PublicLiaison National Institute of NeurologicalDisorders and Stroke. (2020). TuberousSclerosis Fact Sheet | National Instituteof Neurological Disorders and Stroke.Nih.gov.https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tuberous-Sclerosis-Fact-Sheet.My name is William Suringa and I livejust out outside of Washington D.C. inMcLean, Virginia. I am a student atGeorgetown Preparatory School inBethesda, Maryland and I hope to studysciences in college. I am the president ofthe Georgetown Prep HippocraticSociety and I spoke at the InternationalYouth Research Conference (IYRC) inMarch 2021.EUNOIA GLOBAL HEALTH |17
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