In August 2017 after a CBS news crew traveled to Iceland a report was released titled “Inside The Country Where Down Syndrome Is Disappearing”. Since the introduction of more advanced prenatal screening tests in the early 2000’s the vast majority of women in Iceland, almost 100%, who received a positive prenatal test for Trisomy 21, also known as Down syndrome, elected to terminate their pregnancy. On average, only 2 babies are born per year with Down syndrome in Iceland. Geneticist and founder of deCODE Genetics, Kari Stefansson, has studied nearly the entire Icelandic population’s DNA and has his own perspective on the advancements made in medical technology.Read More
On January 10, 2019, Patsy and Albert Christy plead guilty to wreckless homicide for abusing and neglecting their son, Logan, for 20 years until their abuse lead to his death. Logan was kept in his room with a padlock on the door. The window to his room was shattered, the ﬂoor covered with glass and feces, since he was locked in and unable to use the restroom. Logan had been starved, and kept from water. At the time of his death, he had also contracted pneumonia, most likely from the winter air coming through his broken window. For all of this, Patsy and Albert Christy were each only sentenced to 5 years in prison with the option for parole by the following April.Read More
If your child has health problems due to Down syndrome (heart conditions, thyroid issues, etc.), there are lots of financial aid options available to help you pay for anything associated with these health problems. There are a few steps you have to take to get approved for one of these options.Read More
“In Iceland, every single baby – 100 percent of all those diagnosed with Down syndrome – are aborted”. (Bell, L. 2017, para 2). The statistics are chilling, and the rest of the world is not far behind, “98% in Denmark, 90% in Great Britain and the USA” (Bell, L. 2017, para. 6-7). Advocates and families of children with the gift of Down syndrome are shouting their child’s worth in any forum possible, in hopes of saving a life that is truly worth living. Having a child with a disability can be challenging, but, also one of the most beautiful and rewarding experiences to be encountered. Children with Down syndrome teach patience, unconditional love, how to see abilities, not disability; and that a person’s worth is not measured by their intelligence or societal standing, but, by their determination, capacity to spread kindness and joy and to truly see the good in everyone. The medical community needs to be educated on how to deliver a complete diagnosis that presents the positive side of a life with Down syndrome to expectant families.Read More
As soon as I heard the beginning of Jan’s story, I needed to know the rest. I was fascinated by the idea that she had been on this journey for so long—and especially that she chose to take her son with Down syndrome home in a time when the vast majority of kids born with Down syndrome were taken away shortly after birth and put into institutions.
When I met Jan, I think I asked her about a million questions. I wanted to know all about her journey with her son—how it was to raise him, what he’s like now and what advice she had for me as I started on my own journey raising a child with Down syndrome.Read More
ICELAND HAS BECOME A TRIGGER WORD IN THE DOWN SYNDROME COMMUNITY.
It began last August when CBS News “On Assignment” reported the birth rates of people with Down syndrome diminishing to nearly zero in Iceland. The headline read: “’What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing” the short version is this quote:Read More
When should you start early intervention? Just like that extra chromosome, it’s different for every child. Studies show early intervention does make a difference. The evaluator will come to your home to observe your child and will then make recommendations. The recommendations will include what type of therapy they need at the moment and how often, if at all.Read More
I was furious, and I let the Doctor know that he was discounting my current child's life with his recommendation, and that as a medical provider for individuals with "differences," he should value their lives more.Read More