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No Single Story

By Christie Hoos There is no single story which speaks the truth of Down syndrome. Certainly not the outdated pessimism of some medical professionals who see it as a life not worth living. And the more than 80% of terrified parents who terminate their pregnancy as a result. Those dark sketches of burden and heartbreak bear little resemblance to the beautiful children I know. There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down syndrome or not: doing what you have to, the best you can on most days, and not so great on others. But kids are resilient. Kids with Down syndrome especially so. They have to be. I hate to admit it, but the truth does not lie in the air-brushed snapshots of perpetual happiness either. The cuteness, that’s very real. And studies have shown that families who include a member with Down syndrome experience significant amounts of joy and fulfillment. But these children are not angels come down to earth, they are human beings. Amazing and inspiring often, but also grumpy and quirky and stubborn and everything in between. I wouldn’t have it any other way. My daughter is an individual not a stereotype. She is her own unique person. She faces a larger set of challenges and obstacles than most people, and she has to work harder than everyone else. Some people say stubborn like it’s a bad thing, but that iron will has given her a toughness that impresses nurses and doctors, and is in the process of kicking cancer’s butt. She would very much like to control the entire universe (she is her mother’s daughter after all), but often finds herself at the mercy of a world that moves too quickly and unpredictably. She doesn’t take that lying down, let me tell you. She is indomitable. She has a silly sense of humour and loves to tease us with the absurd. She is gentle and sweet and undeniably charming. She insists on being called by her name, and nothing else. She refuses to be labelled in any way, not even endearments or compliments – not honey, or sweetheart, or smart, or brave, or a girl… “I’m just B” she says. She is her own category. “And though she be but little,she is fierce!”~Shakespeare This is her story, and ours. Down syndrome plays a part, and for that we celebrate World Down Syndrome Day along with so many other wonderful individuals and their families. This is no anguished outcry or demand for a cure from bitter parents, this is a celebration. Because our lives are all the more worth living since our daughter, and Down syndrome, became a part of our story. There is no single story which speaks the truth of Down syndrome, there are millions. So here’s us, celebrating 3-21-2015 for all those with Trisomy 21, also known as Down syndrome. Reprinted from Christie's blog, So Here's Us.
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Latest News

19/03/2015
The Edith Lando Charitable Foundation has generously granted DSRF $4,000 for our children and youth programs: specifically, one to one reading, speech and language therapy, occupational therapy and summer school. Thank you very much to the Foundation for your support!
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02/03/2015
The Down Syndrome Research Foundation, along with key partners in the medical community, is undertaking a critical survey that could play a role in shaping the future of health care for individuals with Down syndrome in BC. The survey, focusing on the current health status and needs of individuals with Down syndrome in BC, is open to parents and caregivers of a child, youth or adult with Down syndrome residing in the province of BC. DSRF's aim is to have every family in the BC Down syndrome community complete this survey by the end of March. Please see the letter below for further details, or click here to begin the survey. Dear Parent/Caregiver, Thank you for your time in reading this letter. We are inviting you to participate in the following survey: B.C. Down Syndrome Survey for Parents/Caregivers of Children/Youth/Adults with Down Syndrome Many of us are facing a multitude of challenges in the orchestration of the chronic care needs of our children with Down syndrome. We developed this survey in collaboration with physicians from BC Children’s Hospital and the University of British Columbia, in order to get a better understanding of the current health statuses of children and adults with Down syndrome (DS), and what kind of needs and gaps exist in real life. We are supported by various research networks aiming at improving lives of children with developmental conditions such as NeuroDevNet, TIDE-BC and Children’s Sleep Network. This 80-question survey will take you approximately 40-45 minutes to fill out, and can be saved and completed in more than one sitting. If you chose to save and return, please take note of your 8 digit ‘Return Code’ and the survey web page link as you will be asked to provide the return code when resuming the survey. We recognize that this is an enormous time commitment for you, and encourage and appreciate your participation, as only with your help can we construct a solid plan aiming to improve health and life quality for children and adults with DS in this province. Should you choose to complete this survey, your confidentiality will be maintained and the answers you provide will remain completely anonymous and will not be traceable to you in any way. Your survey will be assigned an anonymous running number, and we will never know your name or be able to identify your child, and neither will any other health care professionals, insurance companies, governments, or other institutions. We will ask you for the first three digits of your postal code so that we can identify any trends or patterns that might be present in your region, but this information will not be used for any other purpose whatsoever. Completing and submitting this survey indicates your implied consent to participate in this important study. The following link will bring you to our survey:https://neurodevnet.med.ualberta.ca/surveys/?s=EekCPeEYAi Please try to complete the questionnaire as completely as possible, as the degree of completeness will determine the quality of the information obtained. We also recognize that for some of the questions you just might not have answers, so please fill out the survey to the best of your ability. We aim to publish the results of this ‘needs assessment survey’ and hope for your participation. Each individual contribution will increase the significance of our findings, adding additional value to our publication; direct quotes from survey responses may also be used in teaching materials for healthcare professionals, to bring awareness to common challenges children, youth, and adults with DS experience. If you are interested in joining our community and would like to connect with the Down Syndrome Research Foundation (e.g. to join a parent group or seek specific information), please click on the following link to email your contact information: http://www.dsrf.org/contact-us/. If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598 (email: RSIL@ors.ubc.ca or call toll free 1-877-822-8598). If you have any questions or are looking for resources regarding Down syndrome, please contact: Ms. Dawn McKenna or Ms. Pat Hanbury at:Down Syndrome Research Foundation1409 Sperling Avenue, Burnaby, BC, V5B 4J8, CanadaPhone: (604) 444-3773 / Fax: (604) 431-9248Email: dawn@dsrf.org pat@dsrf.org If you experience any technical difficulties or are unsure about how to answer particular sections of the survey, please contact: Ms. Nadia BeyzaeiSleep/Wake-Behaviour Clinic & Research LabSunny Hill Health Centre for Children/ B.C. Children’s Hospital3644 Slocan Street, Vancouver, BC, V5M 3E8, CanadaPhone: (604) 453-8300 ext. 8408Email: nadia.beyzaei@cw.bc.ca Sincerely,Ms. Dawn McKenna & Ms. Pat Hanburyon behalf of the Down Syndrome Research Foundation Dr. Sylvia Stockler, Department of Paediatrics, B.C. Children’s Hospital, UBCDr. Osman Ipsiroglu, Department of Paediatrics, B.C. Children’s Hospital, UBCDr. Linlea Armstrong, Department of Medical Genetics, UBCon behalf of the Medical Research Team
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Down Syndrome Research Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773
E-mail: info@dsrf.org