GRANGER, Iowa -- World Down Syndrome Day is March 21st because Trisomy 21 which is down syndrome is three copies of the 21st chromosome. One Iowa woman's organization, Down Syndrome Diagnosis Network, helps families all over the world know they are not alone in the diagnosis.
Down Syndrome Diagnosis Network was started by Jen Jacob from Granger back in 2012 when Jacob was expecting her 4th child. She had a prenatal blood test that said her son Owen had a 99% likelihood of having Down syndrome. She immediately got online for more information and connected with a group of women who all just had children with Down syndrome and they created a Facebook group.
"Just within that group we were able to talk and share about what we were going through and celebrate the really awesome things that were happening, venting and crying about the things that weren’t going well and the frustrations, especially with the diagnosis experience," Jacob said.
This group is where she started collecting stories for her first book, Unexpected. Jacob said the book and the network give people the assurance that their feelings and emotions were valid.
"They might not have been proud of some of those feelings but it was definitely a common theme that some of us were feeling. Some of us were sad when we heard the news some of us were angry, some of us were disappointed, some of us just rolled with the punches," Jacob said.
From there Jacob created the Down Syndrome Diagnosis Network to provide resources and unbiased advice to more than 5,000 families all over the world. Through the website and social media DSDN connects families in different subcategories. A resource Sarah Jorgenson from Des Moines said saved her son Marek's life.
"He was regressing developmentally and there was nothing I could have done about it but because of these moms that I was connected with through DSDN I found the information that I needed and I got that information to my doctors," Jorgenson said.
Down Syndrome Diagnosis Network also has a team of medical professionals that works to advise on medical outreach initiatives such as providing pamphlets with a more informed way of delivering a Down syndrome diagnosis to parents.