More Things to Know About Down Syndrome

by Carrie with Children with 17 comments

I was so overwhelmed with the great response to last month’s post on things to know about Down syndrome, that I’ve decided to make it an ongoing series. Here are some more facts and statistics on the disorder that affects our youngest daughter, Molly, from the Global Down Syndrome Foundation.

  • Down syndrome is one of the leading causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
  • It is extremely rare for a person with Down syndrome to develop a hard tumor cancer, to have a heart attack or to suffer a stroke.
  • Improvement in care over the last 15 years has led to a 20-point increase in IQ for people with Down syndrome.
  • More than 400,000 people in the US and an estimated 3 million worldwide have Down syndrome.
  • Despite being the most frequently occurring chromosomal disorder (1 in 733 births), Down syndrome is the least funded genetic condition by the National Institutes of Health, receiving only 0.0006 of a $31 billion budget in 2009.

While I’m not an expert, I’d love to try and answer any questions you may have about the road ahead for our precious Molly. What questions do you have?


  • Nichol

    I have always been shocked at the low to nil funding for down syndrome, it makes no sense to me. Love the photo of Molly too cute!

    • Maggie

      Nichol, here at the Global Down Syndrome Foundation we feel the same way about funding please visit this website and help pass the word along! Our children deserve fundamental human rights and funding!

      Carrie, another wonderful post! You are an inspiring mom to many and your girls are so lucky to have you. YOU are the advocate Molly needs in her life, she has the best mom in the world!


      • Nichol

        Thank you! I have a 28 year old sister who has down syndrome, and I have been a huge supporter my entire life. I volunteer at events and it’s been the best. At one point I was helping with their bowling leagues, but it now falls on a day and time I can’t do.

        • Carrie with Children

          Thanks Nichol and Maggie! I appreciate both of you reading my post and sharing!

  • Pam King

    Crarrie, Electric Rhythm Cloggers used to do a benefit performance at Pine Castle. Do they still have a day there? If so please get us the info and I will pass it on to Anne and see if we can perform there.

    • Carrie with Children

      Hi Pam! Great idea! I’m not sure what the scoop is with Pine Castle! I’ll have to find out! Will keep you posted!

  • Tara B

    What a great series. I can honestly say I don’t know much about DS. I remember when I was pregnant and going through making the decision to have the specific genetic testing I wish I had a friendly place to find info. (although we chose not to have testing). I definitely will keep reading but will also point other families your direction.

    • Carrie with Children

      Thanks Tara! I appreciate you following along! I’m glad so you are enjoying this series – you are not alone in not knowing much about DS. I’ll be the first to admit that I didn’t know much either until my Molly was born!

  • Emily faliLV

    I love that you are doing these posts. I am learning a lot about Down Syndrome that I wouldn’t have known otherwise. I can’t believe how low the funding is! That is crazy. You are such a wonderful mother and a great advocate for your daughter and so many more!

    • Carrie with Children

      Thank you so much Emily! I’m excited that so many of you are enjoying (and learning!) from these posts! The low funding is such a staggering statistic! Here’s hoping for a change soon in the future!

  • Pam King

    Maybe we could even perform at wherever Molly goes to help.

    • Carrie with Children

      Great idea, Pam! I’ll see if there are any upcoming events!

  • Melissa

    I love these posts! Carrie, thanks for spreading the word! I can not believe it’s such a low supported cause! That blows my mind! I would love to find some local places here to volunteer or donate.

  • Steve

    It takes a special parent to provide special needs. The joy seen in you lovely Molly’s photo shows she has at least one special parent.

    • Carrie with Children

      Thanks for your kind words Steve – So nice of you! We are so very proud of our little Molly!