Welcome

The day you discovered your child would have Down syndrome is an unforgettable day.  The moments of this experience can bring up a variety of emotions. Perhaps you were sad, scared, mad, relieved or possibly even a mix of all of these at once.

Not long after receiving your child’s Down syndrome diagnosis, you likely sat down with a doctor or specialist to review possible medical conditions that were associated with Down syndrome.  You may have heard about heart conditions, thyroid conditions, gastrointestinal issues or that individuals with Down syndrome are more likely to be diagnosed with diabetes or early onset dementia. You may have possibly heard a word that made you shutter and immediately filled you with fear…leukemia.

The truth is individuals–children more specifically–with Down syndrome have a significantly increased risk of developing leukemia. A fact that is hard to accept. Thankfully many individuals with Down syndrome never actually develop this disease; however for a portion of the Down syndrome community, a leukemia diagnosis becomes reality. When the diagnosis does happen, we will be there.

That is how this organization became an idea. Two moms who were brought together by their personal experiences with Down syndrome and leukemia. Two women who found themselves as “cancer moms” that were eventually reaching out to moms and dads of newly diagnosed kids more often than not. They soon realized that too many families in the Down syndrome community were hearing the words “your child has cancer,” and they decided to form a space where these families could gather and find encouragement and support from other families that looked like theirs and understood this journey like no other could. By recommending products and strategies in order to help people navigate a new and complex diagnosis, the founders behind the Down Syndrome & Cancer Coalition aimed to provide support to other families as they found their way.

Both moms understood how isolating it felt to receive a leukemia diagnosis for their children who also had Down syndrome. The world stops when you learn your child has cancer. The Down Syndrome & Cancer Coalition provides a safe space to land for those walking this journey. New members are added to our private online Facebook group often which provides unique camaraderie for those who face similar circumstances. The private group acts as a sounding board for those looking to ask questions, vent frustrations, share milestones, celebrate victories, etc.

Thanks to the support of the Down Syndrome Diagnosis Network (DSDN), the Down Syndrome & Cancer Coalition can exist. By working together, this partnership helps to facilitate specific connections for those who are in need of support.

Sign up on our homepage to receive email updates. Our blog will host personal stories from our group members, tips for extended hospital stays, interviews with oncologists and other medical personnel and so much more. Thank you for taking the time to read our first post and welcome to the Down Syndrome & Cancer Coalition.