This week, a purchase from Sevenly will provide a book that gives critical information to expectant parents who have recently learned about a prenatal diagnosis of Down syndrome. With your support, parents will receive tools and support, empowering them to cope and prepare for the challenges and rewards in store for them. Your purchase will give much more than a book, it will give a family a lifeline.
Our daughter was born in this, the 21st, Century. However, when we received her diagnosis of Down syndrome, the only written information we were provided with was from the mid-20th Century. We were given a dot-matrix printout that listed associated medical concerns with Down syndrome, personalized by the plug-and-chug program adding in “[BABY GIRL] has Down syndrome. Down syndrome is associated with ….” In both form and substance, the picture of Down syndrome was bleak–it was non-existent in fact, because there were no pictures.
Only a few years after her birth a written resource was produced that is recognized by professional medical and parent support organization as THE resource to provide with a Down syndrome test result.
Lettercase provides information and support right away for expectant parents at that overwhelming moment when they first receive a prenatal diagnosis of Down syndrome. Their books include balanced, accurate and up-to-date information in English and Spanish about common medical conditions for people with Down syndrome, available health and education services, resources, and authentic photos of people with Down syndrome in ballet class, on the playground, in school, and at work.
Advances in prenatal testing over the past year mean that more and more women are receiving a prenatal diagnosis of Down syndrome. However, studies show the majority of OB/GYNs receive little to no training about Down syndrome, and, consistent with our personal experience, the majority of women say they do not receive the information they need to understand what a diagnosis means.
Fear is generated by the unknown. With a Down syndrome diagnosis, something we did not know very much about, we were filled with anxiety about what this life could be for our daughter and what it would mean for our lives as her parents. Had we received the Lettercase materials, we could have read of the same associated medical concerns relayed by the antiquated, cold dot-matrix printout, but we would have also seen photos of individuals with Down syndrome and learned of early intervention therapies and inclusive education. The Lettercase materials would have given us an idea of what this life could be like, instead of being left to fear the unknown.
The quality and accuracy of the Lettercase materials are reflected in the professional recognition it has received. Created with the input of representatives from the American Congress of Obstetricians & Gynecologists, the American College of Medical Genetics and Genomics, the national Down syndrome organizations, and the National Society of Genetic Counselors, it has further been recognized as an approved resource by the NSGC and most recently by the ACMG. The Lettercase materials are what medical professionals can provide with confidence to their patients having the approval of their professional medical societies. Moreover, the Lettercase materials have been identified as the kind of information expectant mothers have said they want to receive. Hence, why Lettercase is featured on this site’s essential list of “Prenatal Resources.”
For this week only, a purchase through Sevenly will provide a Lettercase booklet to an expectant mother’s medical professional. Sevenly has received write-ups in Forbes and the L.A. Times. Its founder happens to be a father who adopted a child with Down syndrome (under some incredibly dire circumstances).
Sevenly is offering t-shirts for sale that address the need for accurate information to support expectant mothers. Already, Sevenly has raised over $2 million in its “fund a cause per week” efforts. But, as that phrase explains, this campaign will run for this week only. So, make your purchase today and help provide accurate information–not a dot matrix printout–to expectant parents receiving a Down syndrome prenatal test result.
Disclosure: Lettercase is part of the National Center for Prenatal & Postnatal Down Syndrome Resources; I am a member of the Center’s fundraising committee and raise funds for the Center.
Saving Downs does not endorse the Lettercase resource as it presents abortion as an option following a prenatal diagnosis. This devalues the lives of people with Down syndrome. We only advocate for our community, not prenatal selection.
Although providing accurate information is important, prenatal screening and testing should not be used for Down syndrome selective abortion, as such a practice is eugenic and discriminatory.
The Lettercase resource also presents Down syndrome in a medical model of “disability” rather than a social model which would emphasise the inherent dignity of people with Down syndrome first and foremost, rather than as a medical condition.
The pictures are pretty cool though.