This site was created by Deedah’s family to help spread awareness and information for those seeking positive experiences with Down syndrome.   We have a son, Jonathan, who has Down syndrome.  Mom and sister Charlotte made a film about Charlotte and Jonathan’s relationship, specifically what it is like to have brother with Down syndrome.  The film is called “Deedah” which is the nickname Jonathan gave to Charlotte.

Our hope is that this film will be distributed widely to schools, hospitals, doctor’s offices, therapists and families to help explain what living with Down syndrome is really like.  For us, it has been a blessing beyond description.  Jonathan has taught us compassion, understanding, forgiveness, and his surprising wit has never failed to make us laugh.

To know Jonathan is to love him.  We hope that you spend some time to get to know him as well.

6 Responses to About

  1. Rich Delaney says:

    Just wanted to drop you a note and tell you that I enjoy your blog and am anticipating the arrival of my own copy of Deedah and me (I believe it should get to me today). My wife and I recently found out that our daughter, due on Thanksgiving, has Ds. I thought I would share a couple of entries in my blog that I am proud of
    Thanks again for presenting the positive side of Ds
    Rich Delaney

  2. Tamara Muro says:

    Just watched the trailer on youtube. Sad that I wouldn’t have been searching for a movie like this if our grand daughter wasn’t born with down syndrome. Glad she was. We are filmmakers too. We have worked on more then 65 films including TITANIC. Can’t wait to get our copy of your film. Our daughters blog about our up syndrome grand daughter is amazing with outstanding photos. Visit it @ http://www.thebartolonefamily.com. Bless you and thank you for sharing your lives.
    Tamara Muro

  3. I LOVED watching your film, Deedah! I have my own little Deedah in the making. Her name is Greta and she’s 5. Her little brother, John Michael, is almost 3 and has Ds. He calls her “Deh dah” for Greta and while she doesn’t articulate as well as Charlotte, her mannerisms and care for her brother are so similar! We have 5 children and they all love him very much, but I think Greta and John Michael share a very special “Deedah”-like relationship. Thank you for sharing your story. I can’t wait to share it with others.

  4. owen cupari says:

    hey jonathon its your cousin owen. Hope to see you soon.

  5. Kathleen Chu says:

    Hi Deedah,

    Everyday Health has a new TV series that profiles ordinary people who overcome extraordinary obstacles and who are helping others lead healthier, happier lives.

    Episode 4 airs this Saturday, September 24th, on local ABC stations, and features Sarah Cronk, the inspirational teenager who founded The Sparkle Effect as well as Lauren Potter, the superstar Cheerio cheerleader on the hit show Glee. The Sparkle Effect is an innovative, student-run program that helps high school students across the country create cheerleading squads that include students with disabilities.
    For more details on the show, recap episodes and other information, check out:


    We think the visitors of deedahandme.com will find Sarah’s mission to improve the self esteem of children and teenagers with disabilities interesting and inspiring, especially with the relevant tie-in to Glee. Please let me know if you are able to share this story and point people to the site page so that we can add you to the @Everydayhealth Follow Friday Twitter shout out (reaching almost 50,000 followers)!

    Happy Healthy Living!

    Kathleen Chu
    Outreach Director
    Everyday Health
    345 Hudson Street, 16th Floor
    New York, New York 10014


  6. Eric. Aronsohn says:

    I would like to order your movie. The pay pal order does not work. We have a 6 year old Down syndrome son. Excited to watch it.

Leave a Reply

Your email address will not be published. Required fields are marked *