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2221 Peachtree Road Ste D-226Atlanta, GA 30309Voicemail (404) 320-3233Fax (404) [email protected]
Executive DirectorVanessa [email protected]
Assistant Director:Stephanie [email protected]
PresidentTamara [email protected]
TreasurerScott [email protected]
SecretaryKelly [email protected]
Education DirectorEdward [email protected]
Networking Leadership DirectorDeslie [email protected]
Awareness DirectorJennifer [email protected]
Advocacy and IT DirectorBrian [email protected]
Fundraising DirectorJohn [email protected]
D.A.D.S. of Atlanta Director: Chris [email protected]
Hispanic/AHSDA DirectorSusy [email protected]
Adult Down Syndrome Clinic Ex-Officio DirectorJanice [email protected]
Emory Down Syndrome Clinic Ex-Officio DirectorMeagan [email protected]
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Share your photos for a chance to be featured in upcoming newsletters! Send a high-resolution JPEG or similar file with your child’s name, age and birthday by May 31st to [email protected].
DSAAToday
First Quarter, 2013
From the Executive Director Vanessa Champlin
pring is a time of great change. The weather warms up, activities move outside and everywhere you look you see renewal and growth. DSAA is embracing change as we move to become a stronger, better organization.
We’ve updated our look with a new logo, revamped our newsletter format (thanks to all of you who missed it), added programming and events -- and we’re not done yet! Over the coming months you will continue to see new things from us.
We’ve also hired a new Assistant Director, (AD) Stephanie Donlan. Stephanie comes to us from serving as President of the Board at Mustard Seeds PMO and brings with her experi-ence in market branding, communications, public relations and media relations. We are so excited to have her as part of our team!
Our previous AD Debbie Hibben has gone back to her true passion – teaching - but con-tinues to stay involved with DSAA. We miss her terribly but are thrilled to see her fulfilling her dreams.
With any change we make, we will stay focused on our mission and on our goal to better serve you, our DSAA families. We appreciate your ongoing support and look forward to hearing from you regarding anything we can do to better assist individuals with Down syndrome or to improve on what we are already doing.
Please know you are welcome to call or write anytime, and I look forward to meeting as many of you as possible, if I have not already.
Warm regards, Vanessa
SS
P.S.We’ve also got a new address – make sure to note: it’s now 2221 Peachtree Road, Suite D-226, Atlanta, GA 30309.
Family Connection
DSAA DSAA Families were out in force for the 15th Annual Disability Day at the Capital Thursday, February 21, 2013.
Disability Day is an annual rally sponsored by the Georgia Council on Developmental Disabilities on the steps of the State Capitol each year to pro-mote access, opportunity and meaningful community living for Georgians with disabilities and their families.
Out and About
What’s Inside? Table of Contents
DSAA families meeting up for the day. 2
reetings DSAA family and friends. I hope you like the changes we’ve been making – new look, new programs and events, new faces – you talked and we listened. Vanessa has been leading the charge since late last summer and along with our new assistant director, Stephanie, and our board of directors, the DSAA is better than ever! Of course, when you remodel, there are delays and change orders, and the past year gave us more than our share. Just because you haven’t heard from us as often, doesn’t mean we’re not working for you. Please continue to give us feedback (good and bad) so we can continue to grow and improve our organization.
I just returned from our first family trip to Disney, with three boys aged 9 and under. While there were a great many magical moments, and maybe a few more tantrums than we would’ve liked, it was a fantastic trip! A few tips from me to you, if you are thinking about planning a visit:
• Visit guest relations first thing, and request a “Guest Assistance Card”. Your special needs child and up to 5 additional party members will be allowed access to Fast Pass entrances and other perks. • Consider taking a stroller (we borrowed a jogger – thanks Lisa!), even if you don’t think your special needs child needs one because he/she will tire more quickly than you think. You can get a sticker from guest relations that allows you to use your “stroller as a wheelchair”, which grants you access through handicap entrances, also shortening most wait times. • Let them know at each restaurant (full- and quick-service) if you have someone in your party with food allergies. They are above and beyond accommodating and take special care to prevent cross-contamination.
Lastly, I have to take a minute to brag. Jackson, who is 7 and in a first grade moderate class at Cooper Elementary, has been selected to receive an award of excellence by the Gwinnett Coun-cil for Exceptional Children this month. We worry constantly that his speech isn’t where it could or should be or that he isn’t making the strides that would eventually put him into a mainstream classroom. Yet he’s being recognized from his school for all the progress that he has made this year in meeting or exceeding his IEP (Individual Education Program) goals. Celebrate the little victories . . . try not to worry so much. Take care, Tamara
GGfrom the Executive Director .......................... 1
Letter from the President .............................. 2
DSAA Out and About .................................2-3
Historia de una Madre .................................. 4
Scholarships ................................................. 4
It’s Election Time .......................................... 4
A Mother’s Story ........................................... 5
Birthdays ....................................................... 6
Nominations for 2013
Buddy Awards ............................................... 7
Free Booklet ................................................. 7
Did You Know ............................................... 7
Did You Know ............................................... 8
DSAA Community Groups ............................ 8
Save the Date ............................................... 8
The Emory
Connection ..............................................9-10
Kids Corner! ................................................ 10
Photos ........................................................ 11
Photos ........................................................ 12
Tamara Pursley
Letter from the President
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Our own Evan Nodvin introduced Governor Deal and kicked off the day!
JC and Skyler Quinby with Senator Carter.
Scholarships Available...Ruby’s Rainbow is dedicated to the higher educational needs of adults with Down syndrome. Their mission is to create awareness of the capabilities of these amazing individuals and also grant scholarships for enrichment, vocational or post-secondary education-al classes. They have funds available for the fall semester of 2013 and are currently seeking applicants!!! They were able to grant eleven scholarships in 2012 (their first year) and are looking forward to helping more individuals this year. You can find more information on their Web site at: http://www.rubysrainbow.org/how-to-ap-ply.html.
It’s Election Time!DSAA is pleased to present the 2013 slate for Board of Directors. Voting will be done electronically in late April.
The nominees are:Tamara Pursley, President (not up for vote, still serving term)John Ducat, Vice President (currently serving as Fundrais-ing and Buddy Walk Chair) Kelly Perry, Treasurer (Cur-rently serving as Secretary) Jennifer Sheran, Secretary (Currently serving as Aware-ness Director)
All nominees look forward to continuing to serve DSAA and our Members.
ola! Que tal, mi nombre es Jhana y soy madre de una “niña her-mosa” que tiene síndrome de Down. Quisiera contarles un poco acerca de la llegada de mi hija, bueno cuando yo estaba embarazada de ella fue algo muy hermoso y que apesar de ser mi segundo embarazo, lo viví como si este fuera el primero, todo muy lindo a pesar de los malestares y nauseas. Cuando yo tenía 4 meses o tal vez un poco más me hicieron mi primer ultrasonido, el cual no pudo mostrar mucho por ello deci-dieron hacerme un segundo, en el salieron algunas cosas que indicaban que algo no estaba bien, también me habían dicho de que una prueba de sangre que me habían realizado era anormal, que el corazón de mi bebe tenía una mancha, que sólo le miraban una mano, no saben lo doloroso que fue eso para mí estaba muy triste y comenze a llorar y la verdad es que no lograba entender todo lo que me habían dicho, y es que esto no fue todo me dieron una cita más pero no en la clínica sino en el hospital esto para un tercer ultrasonido con más exactitude esto para confirmar las sospechas de la ginecóloga que con malos modos y palabras se referia hacia los niños con síndrome de Down. Ella decía que debía apurarme para saber sí mi bebe tendría el síndrome y me aconsejaba hacerme la amniosentesis cuanto antes, el día llego, asisti a la cita en el hospital, ahí me realizaron el ultrasonido, yo ya tenía 6 meses o tal vez un poco más. Yo estaba muy nerviosa y preocu-pada por lo que me fueran a decir, pero al mismo tiempo tocaba a mi hija en mi vientre y le decía que no importaba lo que me dijeran y que ella tenía que nacer así tal cual fuera ella con o sin mano y con y sin el síndrome de Down o lo que fuera. Yo ya estaba decidida mi hija nacería
y no me realizaría la amniosentesis, porque yo pensaba que no era necesario que me realizaran esa prueba, sabía que era riesgosa y muy peligrosa para mi bebe, mi esposo y mis padres me apoyaban en mi decision, cualqui-era que esta fuera y bueno no me realize la amniosentesis y respeto al ultrasonido pues vieron algunas características communes en niños con síndrome de Down y me dijeron que sí que tenía cierto porcentaje de que mi bebé lo tuvierse, pero no me importo porque yo amaba tanto a mi hija que no preocupaba ya por nada de lo que me decían.
La verdad que fue larga la espera y a veces dificil, pero valío la pena mi hija nacio en Deciember del 2009 y no saben ella nacio tan rapido y al ella nacer lo primero que pregunte a mi esposo, es que sí ella tenía sus 2 manitas. Y es que eso era la preocupacion mas grande que yo tenia, al él contestarme que sí yo me sentí muy feliz, a los pocos minutos el doctor que me atendio me dijo que al parecer mi hija tenía Trisomia 21, según por sus rasgos fisicos, y él me pregunto si yo sabia lo que esto queria decir, y yo le respondi que sí, que mi hija habia nacido con síndrome de Down y el me dijo que sí que era correcto y que tendrian que realizar pruebas geneticas, para confirmer el diagnóstico. Para mi esto no era una novedad, pero a mi esposo si no le caia él
no lo aceptaba, decia que los médicos que me atendieron no sabian nada y que su hija estaba bien al querernos dar información y orient-ación acerca del tema el se negaba, no saben esto para mi fue muy dolorosa pero trataba de entenderlo, el tuvo muy poca escuela, lo cual creó que influye ya que el era muy ignorante respecto al tema, tardo en superarlo, pero ahí esta apoyando y queriendo tanto a su hija. Y es que sí no fue cosa fácil cuando ella nació tuvo varias complicaciones como el corazón, su respiración y alimentación, por lo cual ella tuvo que pasar 29 días en el hospital, sí 29 largos días que nunca olvidare saben pase la Navidad en el hospital, el Año Nuevo y fue hasta el 5 de Enero del solo mi hijita pudo salir del hospital, ese día fue el más feliz de mi vida, creí que nunca llegaría ese día, pero al fin mi hija estaba en casa con su familia.
Y bueno de ahi en adelante comenzaron las citas con doctores, con especialistas y las terapias y con ello el progreso de mi hija, día a día ella luchando, aprendiendo y esforzandose por hacer tódo, tratando de imitar a su hermano
Historia de una Madre
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A Mother’s Story
ello! My name is Jhoana, and I am the mother of a little girl with Down syndrome. I would like to tell you a little about the arrival of my daughter. When I was pregnant with her it was something very beautiful, and even though it was my second pregnancy, I lived it as though it were my first because everything about it was beautiful even with the usual sickness and nausea. When I was four months along, may-be a little more, they did my first ultrasound that didn’t show very well, so they decided to do another one in which they found some indications that something was wrong. In addition, they’d done a blood test that came out abnormal. My baby’s heart had a spot, and they could only see one hand. You don’t know how painful that was for me, and I was very sad and started to cry, and the truth is I could not even manage to understand all that they told me. This was not all, they gave me another appointment, but this one was not in the clinic but in the hospital and this third ultrasound was meant to be more precise and one that could confirm the suspicions of the gynecologist who used bad manner and words when she referred to children with Down syndrome. She told me we should hurry to find out if my baby had Down syndrome, and she counseled me to do the amniocentesis as soon as possible. The day came, I went to my hospital appointment, they did the ultrasound, I was 6 months along, maybe a little more. I was very ner-vous and worried to hear what they would say to me. At the same time I touched my baby on my tummy, and I told her it did not matter what they would tell me, she had to be born in whatever condition that might be - with or without a hand and with or without
Down syndrome, whatever the case might be. I was now decided that my daughter was to be born, and I would not do the amnio-centesis because I thought that it was not necessary for them to do this test. I knew it was risky and very dangerous for my baby. My husband and my parents all supported me in this decision - whatever would be the outcome. Well, I did not do the amniocente-sis, and with respect to the ultrasound, they saw some characteristics common to babies with Down syndrome. They told me that she had a certain percentage of likelihood to have it (Down syndrome), but it did not matter to me because I loved my daughter so very much - no matter what anyone said.
The truth is that it was a long wait and at times difficult, but it was worth it when my daughter was born in December 2009. She was born so quickly, and at her birth my first question to my husband was did she have her two little hands. It was my biggest worry, and when he told me that she did, I felt very happy. A few minutes later the attending doctor told me my daughter had trisomy 21, according to physical features observed, and he asked me if I knew what this meant. I said, yes, that she had Down syndrome, and he told me that was correct and that we would have to do genetic tests to confirm the diagnosis. For me this was not a surprise, but for my husband it was. He did not accept it. He said the doctors that took care of me didn’t know anything and that our daughter was fine. When they wanted to give us information and orientation about the topic, he refused it. You can’t imagine how painful this was for me, but I tried to understand him. He hardly went to school, which I think influenced him because he was not knowledgeable on such topics. It took time for him to get past that, but then he supported and loved our daughter so very much. It’s true it was not easy when she was born because there were various compli-cations like her heart, her respiration and
feeding (for which she had to spend 29 days in the hospital. YES, 29 long days that I will never forget). You know we spent Christmas and New Year’s in the hospital, and it was not until the 5th of January that my little daughter could leave the hospital. This was the happiest day of my life. I thought the day would never come, but at last my daughter was home with her family.
Well, from there forward began the appoint-ments with doctors, with specialists, the therapists and so my daughter progressed. Day by day she was fighting, learning and struggling to do everything. Trying to imitate her older brother and, well, everyone really. She is very smart and very capable! I support her, and I am always with her mov-ing forward, loving her more each day. The time passes rapidly. You know that soon she will turn three years old and then we are in the middle of setting up her transition to the school system. This makes me very emo-tional and also very nervous.I can tell you that to have a child with Down syndrome is a “Great Blessing.” Truly, I have been witness to it, and I recommend that all of you love your children, your cousins, your friends and family members who have Down syndrome Love them and treat them the same as any person because they are beauti-ful human beings.
*And to my little girl, !Gracias!, muchas Gra-cias for existing and for having arrived to my life, you are an Angel, I Love You!*
mayor y bueno a todos, es que ella es muy lista y muy capaz! Yo la apoyo y ahí estoy con ella avanzando y amandola más cada día, el tiempo pasa rapido saben, ella casi cumple 3 añitos y ahora ya estamos en tramites para la transición a la escuela, eso me emociona muchísimo, pero tambíen me da muchos nervios.
Les puedo decir que tener un hijo es un privilegio, pero tener un hijo con síndrome
de Down es una “Gran Bendicion” de verdad yo lo he comprobado y les recomendo que amen a sus hijos, primos, amigos y familiars que tengan síndrome de Down, quieranlos y tratenlos igual que a las demás personas ellos son hermosos seres humanos.
*Y a tí mi niña !Gracias!, muchas Gracias por existir y haber llegado a mí vida, eres un Angel, Te Amo!*
continuar Historia de una Madre
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BIRTHDAYS!January: Alexander FreemanAlexandra ThormanAmyia HodgeBreAnna WhiteCamille DrakeChandler CashCharlie WardDarvin Ramos-IgnacioDemeadra D. Obi DavidsonElisha McKenzieEthan CornwellGabe Martin Gabi BergerGavin CookGorge AntonioGrace Key NanceGracie KingGrant TillmanHayden IrvingHunter RoachIsaac MullenJ.J. BriggsJacob BondJacob MooreJames KellyJC QuinbyJenna QuigleyJennings SlaughterJoe Steven Joseph CarterKatherine (Katya) VazheninKylie JohnsonLucy GenskeMartha HaythornMcClain AshworthMichelle NorweckMoriah RozellNoah McCallumNoal Larson IngalsbeNoal SlatonOmari JenkinsPhilp Francis LaneRegina ThompsonSarah Grace MorrisShannon LaffeyShirley Salazar TobarTeddy HeckTroy Jason ForresterTucker RowlettTysor BrownZachary Seelbinder February: Ada Kate EnckAdama JallowAlexis Rutland
Angelo Hector GalanteChristian West
Cohen Echols
Colin StephensColten RozierCortni WrightDebra EubanksFelicia RomanGavin GeamanHollis Todd BurkeHugh RowlingJacob PitreJason GarciaJohn ChamblissJoseph Anderson JustJoseph WilliamsKatherine (Katie) CohenourKathryn O’KeefeKim JohnsonLayla NoorLinda ValdezLukas StaffanellMaggie TresslerMary Beth HurstMatthew JonesNathan AndersonNdeye Modade GeisslingerPaloma FloresPaytun DaSilvaPeter CookPreston Hamilton ThanepohnRick RaschkeRuby LoveladySara Kate MulliganSarah CostelloShane Jackson, JrSonia WalkerSuzanne Goossens March: Aidan HensonAmina ParkerAmy BallewAnna MoatesAvery SteinBenjamin DeGraziaBradley ThompsonBrett BarksdaleCaden AdamsCaleb CampanileCarter TafelskiChase RiggottChase Walker HiltonDarden GlassDevon Van UumDylan HallElijah James EdwardsEliza Lauren PerkinsEmory PerryFrancesca GuarigliaGracie RobinsonGwyneth MaulsbyHannah FoyIan Stewart
Isabella Decoufle’Jacob DouglasJade Audrey WynnsJames MathisJonathan PerezJose BanosKaleb A. Awoke MechegiaKaren ValentinoKatherine EubanksKathleen Van UumKatie HarwellKevin KuehnKristen HollandLeah Kate WeatherbyMadison Leah ArnoldMatthew TaylorMeera WallMichael HamlettNicholas StevensNoelle CampbellRachel NicholsonRain SmithRodrigo TortorelliRoss KirbySiena BrignolaSierra “Rain” SmithSierra CrickSofia JonesTaylor BarbeeTodd BesmertnikTravis CudabacVictor RosalesWesley “Carter” LuceroWill ClowerWill MarkwellWyatt Burnell CornZahra Rowe
Troy Jason Forrester, turned 4 on
January 13th!
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Nominations for 2013 Buddy of the Year and Other Awards is Now Open!
The Buddy of The Year has been given by the Down Syndrome Association of Atlanta since 2006 to a person with Down syndrome age 16 or older who serves as a role model for other individuals with Down syndrome and has achieved in an area of education, service or special interest. The Buddy of the Year will serve as the organization’s Buddy Ambassador and will be the Grand Marshall of the Atlanta Buddy Walk.
The DSAA also honors others who have made significant contributions to the Down syndrome community in metro Atlanta, including:
• EducatoroftheYearrecognizinganeducatorwhoseworkreflects significant educational success for students with Down syndrome, the highest standards of educational quality and who advocates for the success of his/her students. • AdvocateoftheYearforanindividualwhohasmadesignificantefforts to influence public policy and perception on behalf of individuals with special needs and for individuals with Down syndrome in particular. • VolunteeroftheYeartoanindividualwhothroughhisorhervolunteer efforts has made a significant contribution to the Down Syndrome Association of Atlanta and its members • SponsoroftheYearrecognizingacorporationwhosesponsorshipwith monetary or in kind, has helped the Down Syndrome Association of Atlanta better serve its members through programs, support and education.
Visit www.dsaatl.org for more information and nomination forms.
The 2012 Buddy of the Year, Christopher Currere.
Free Booklet About Down SyndromeUnderstanding a Down Syndrome Diagnosis, a booklet produced by the Joseph P. Kennedy, Jr. Foundation with input from Down syndrome organizations and medical professionals, was designed to help doctors in delivering a prenatal diagnosis and also to help parents understand the diagnosis. The booklet contains up-to-date information about health and ed-ucation services, common medical conditions and available resources. It’s a useful guide for parents and the digital version is free and can be downloaded here: http://lettercase.org/get-the-booklet/.
The Marcus Jewish Community Center of Atlanta (MJCCA) offers special needs programming through the Preschool, Club J, Dance, Gym-nastics, Tennis, Sports Leagues, Cooking/Art, Drama, Summer Camp and more! (And a fitness center, pool etcetera for mom and dad!) And guess what? You do NOT need to be a member of the MJCCA to participate in many of their pro-grams! The MJCCA serves people of ALL religions and ethnicities. The MJCCA offers programs for special needs families that they call inclusion programming. This
means that with the support of an Inclusion Specialist, children have access to the same wonderful opportunities as their typical peers. Children may receive special as-sistance from a facilitator or have accommodations made to the pro-gram. Their Inclusion Specialist will work with parents and MJCCA staff to coordinate the best experience for each child, as well as oversee the Inclusion Program during the summer.The Inclusion Camp Program offers an opportunity for children with disabilities to participate in mainstream camp programs.
Did You Know?
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Scholarships are offered for families with limited resources.
Children in the inclusion program may receive special assistance from a facilitator or have accommodations made to the program. The MJCC also offers a teen camp program where teens participate in traditional camp activities, take day trips to Atlanta destinations, and learn valuable life skills in a fun and loving environment. (Designed for the 13-18 year old.)
Please contact Jennifer Lieb, Inclusion Specialist for more information (in office Monday, Wednesday and Friday) at 678-812- 4094 or at [email protected] or visit http://www.atlantajcc.org/ for more information.
MJCC’s Splash ParkMJCC’s Preschool Playground
Networking Director, Deslie Quin-by [email protected]
Outside Metro Atlanta, Emily Jones, [email protected]
Alpharetta/Milton, Mary McNich-ols, [email protected]
AHSDA (Hispanic Group) Erenia Castillo, [email protected] or Susy [email protected]
Athens, Victoria Pressley, [email protected]
Carrollton, Villa Rica, Douglasville, Nicole Mitchell, [email protected]
Cherokee County, Amber Chase, [email protected]
Cobb County, Regenia Guariglia, [email protected]
Columbus, Angels Among Us, Melissa Clark, [email protected]
Dekalb/Atlanta, Lisa Newbern, [email protected] and on Face-book http://www.facebook.com/groups/DSPlaygroup/
Gwinnett, Southwest, Lisa Brown, [email protected] and on Facebook http://www.facebook.com/groups/DSPlaygroup/
Henry County and surrounding areas, Melissa Kendrick, [email protected] Alison Utterback, [email protected]
Houston County/Warner Robins, Donna Crick, [email protected]
Monticello Miracles, Kelly Copelan, [email protected]
North Atlanta (Forsyth/North Gwinnett/John’s Creek), Tricia Harwell, [email protected] and on Facebook https://www.facebook.com/groups/DSConnec-tionNorthMetro
Peachtree City/Newnan/Fayette- The Upside of Downs, Katie Reyes, [email protected]
Stone Mountain/Lithonia Bright Beginnings, Lisa Lewis-Peck, [email protected]
South Fulton, Shining on Ds, Cathy Webb, [email protected]
If you are interested in starting a group in your area, contact us at [email protected].
Save the Date!2013 DSAA Summer Party, May 4th, 10:00 am – 3:00 pm, Stone Mountain Park2013 AHSDA Annual Picnic, June 1st, 10:00 am – 2:30 pm, Mason Mill Park2013 Buddy Walk, Sunday, October 13th Centennial Olympic ParkDSAA is always looking for great volunteers to help with our upcom-ing events. You can volunteer for a single day or offer to be part of a planning committee. Contact us at [email protected] if you are interested, we’d love to hear from you! DSAA
Community Groups
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The Emory Down Syndrome Clinic is excited to introduce our new Clinic Coordinator and Genetic Counselor, Meagan Smith, MS. She has recently relocated from Pittsburgh and welcomes the warm weather in Atlanta.
Meagan obtained her Bachelor of Arts degrees from Salisbury University in Salisbury, Maryland, where she studied biology, genetics and minored in chemis-try. She obtained her Master of Sciences degree in Genetic Counseling from the University of Pittsburgh in Pittsburgh, Pennsylvania.
Meagan previously worked for the Chil-dren’s Hospital of Pittsburgh’s Sickle Cell Division, where she served as research coordinator for numerous clinical trials. She also served as a clinical case manag-er for her pediatric patients. Meagan will be responsible for sched-uling families for clinic, and providing genetic counseling for families of newly diagnosed patients. She will also be available to discuss any other needs that may arise. She is also looking forward to participating in the Down Syndrome of Association Atlanta social and commu-nity activities.
As you may know, we ask that fami-lies call directly to make their child’s appointment. This gives us an opportu-nity to get acquainted and explain what is involved in a typical clinic visit. The clinic currently serves children with Down syndrome from birth through age 10 years.
As always, we welcome your comments and suggestions. For more information about Emory Down Syndrome Clinic or to schedule an appointment, please contact Meagan Smith at 404-778-8528 or [email protected].
The Emory Connection
During their first year, these medical students will attend numerous lectures, spend countless hours studying bio-logical mechanisms and pathways and begin to develop the skills necessary for successful patient-doctor relationships. The reason they remember Dr. Jeannie’s lecture will not be the slides about the history of Down syndrome or facts about the common associated medical conditions. It will be the families of children with Down syndrome who share their lives and perspectives with these young future physicians. The Quinby family was a part of the November 2011 family panel that taught the first year class the impor-tance of keeping the patient, not the diagnosis first. Talking with Douglas Quinby after the lecture, he shared his excitement at giving these students a glimpse into his family’s life, “It was an amazing experience to be able to share JC’s struggles and triumphs with a roomful of future doctors. I hope that hearing our story will influence their future interactions with members of the Down syndrome community.” When asked what the one thing he most wished the students remembered was Douglas responded, “That these chil-dren with Down syndrome are children first and foremost.”
After the parents of the family panel had shared their stories and hopes for their children, the medical students were treated to the life and dreams of one more child with Down syndrome. Her story is best told through her own words so we’ve included the transcript of what Martha Haythorn shared with a full lecture hall of 160 students last November.
“My name is Martha Montgomery Hay-thorn. I am 11 years old. I live with my family: Trace, Jacob, Mary, and my dog Desi. I feel good about teaching you today. I have Down syndrome. The hardest thing about Down syndrome is school. My brain works differently than other kids’. It’s harder for me to re-member things. The teachers in school help me. My hardest subject is math, and my easiest subject is science. I am in 6th grade, and I go to Renfroe Mid-dle School. I am in classes with all the other kids at school. I want to talk to you about my health. I was feeling tired all the time. I had a hard time concen-trating and staying on task. Whenever I ran I was tired. My head hurt a lot. I went to see Dr. Thomsen my ENT. He said I had to go to the hospital for a sleep study. I had to get in a bed and a nurse put all these cords on me and this icky goopy stuff. They put tubes and pads on my nose. I felt miserable. They learned I had sleep apnea. Sleep apnea is when you stop breathing during the night. Dr. Thomsen said we had to get my tonsils and adenoids out. It is scary when they put the mask on your face. The nurses treated me very well and were very nice. When I was done my throat hurt. I recommend eating cold mac and cheese after you get your tonsils out. Everything else burned my throat. I am feeling great right now. I am feeling better than
Emory’s Future Doctors Will Never Forget
By Jean Luan McCollEach fall a new enthusiastic group of doctors-to-be becomes the first year class of Emory University School of Medicine. And each fall Dr. Jeannie Visootsak, medical director of the Down Syndrome Clinic at Emory University, conducts a lecture that leaves an indelible mark on the future of medicine.
The Lecture
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Kids Corner!
I used to. I concentrate better now. I walk a mile to school every day. I am not sure what I am going to do when I grow up, but I have some ideas. When I finish high school I would like to go to college in California because I like learning and I have never been to California. I would like to get married someday. I also would like to have chil-dren. I hope to have two girls. I would like to live in an apartment with my family. I look forward to being respon-
sible for myself. I would like to have a job. It would be fun to be an actress, to work in a hospital or in a library.”
Martha’s speech serves as a poignant ex-ample of what Douglas Quinby wished to share with Emory’s most recent group of doctors-in-training. That all children have passions and goals and to see only the diagnosis of Down syndrome is to ignore the amazing possibilities that lie within that child. It is easy to define a
person’s abilities and limitations by a di-agnosis; our challenge then is to inspire a generation of doctors who look for all possibilities in a child, regardless of di-agnosis, and provide ongoing guidance and encouragement to help each child achieve that potential.
Jean Luan McColl is the Down Syndrome Clinic and Research Assistant
at Emory University.
The Lecture continued
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Photos
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Special thanks toRebecca Andersonfor sharing herphotography
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DSAAToday Family Connection
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