My Name: Karen. I’m a working mom of four sons. I used to say that only one of them had special needs, but it seems that all kids have special needs of one form or another. My husband Mark (who has his own blog) is a full-time stay-at-home Dad. We live in rural Pennsylvania.
Contact me at: benandhisbrothers@yahoo.com
Ben and his Brothers: Life with 4 boys and CdLS 
October 21, 2006 at 3:55 pm
Hi Karen,
It is a joy to know your family is well, healthy and happy.
May God Bless you all.
Love,
Felicia
October 21, 2006 at 7:28 pm
Your mom sent your blog to me. The boys have grown a lot since I saw pictures of them. your mom keeps me posted on everything.
I wish you and your husband much luck with Benjamin. I know with the love you both have for each other and for your boys, he will be ok.
Your extended family in Trinidad will always be there for you.
I had the pleasure of meeting your parents and sister when I was in Trinidad in Dec. 2004. Lovely people.
Good Luck again to all of you and I will keep checking your blog. Benjamin will grow up to tackle his brothers, I am sure.
with love
sonia in Toronto
October 27, 2006 at 1:48 am
This blog is really very neat. Now I can stay here in Trinidad and know exactly what is going on. Ben seems to have grown since I last saw him, which was just 2 weeks ago. Why didn’t Mark prepare that lovely meal when I was visiting? Anyway, happy to know that all is going well. Lots of love to the big boys
Grandma
October 30, 2006 at 8:13 am
I like Jon’s new hair cut and Isaac’s scary teeth. I was scared out of my wits even from this distance.
Grandma
December 12, 2006 at 9:40 am
Hey Karen,
This blog is great!! It’s so good to see pictures of everyone. The boys are sooo big! It’s been a few YEARS since we have seen them. I wonder if Isaac and Israel would even remember eachother. You guys sound like your doing great and we are so glad to hear that. Take care and give the babies kisses for us.
~Stacey from good old Williamsport
December 20, 2006 at 4:58 pm
Karen, I loved your blog. Thanks for your Christmas letter. I am praying for you. I understand a little of what you are going through.
Robin
January 5, 2008 at 1:32 am
Hi, My name is Robin, and i’m a mother of a CdLS child. My daughter’s name is Samantha and she’ll be 6 yrs. old in March. If you would like to talk, share stories, anything at all. please feel free to contact me anytime… I also use msn messenger… my contact for msn messenger is the same as my email address… mikedwschick@yahoo.ca
November 17, 2008 at 6:48 pm
Hey Karen
Shannon here a friend of your mum’s from Australia….I am due to have my baby friday if not before – he is being stubborn lol…..and your mum sent me your blog. I love it – it is great! Cute boys!!!!
Take care, Shannon.x.
May 28, 2009 at 5:58 am
Hi Karen, I also from Trini yuh know! I find yuh site by chance jes surfing de net. Ah have ah blog (food and fun) which ah would like yuh tuh visit too. It is written in German, buh it easy tuh understand. Leh meh know wah yuh tink bout meh blog. Ah find yours interesting and yuh have ah nice family! Count yuh blessings!
peace and love tuh yuh an de family.
Don
August 9, 2009 at 3:39 pm
Hi Karen,
Just been to the cdls world conf in England. I have been following ‘ben for nearly two yrs now’. My aaron has cdls and is two since April 2nd so just twelve months between them. I also have a 4yr old girl and 4 month old girl. Aaron is doing very well, eating and drinking orally, quite vocal, but not sitting by himself or standing/walking yet. How is Bens sitting/standing? Aaron’s ptosis is quite bad too so need to get that checked out as I feel it is hindering his progress. Your website is excellent. Keep up the good work.
June 15, 2010 at 9:33 am
Hi Karen,Just been to the cdls world conf in England. I have been following ‘ben for nearly two yrs now’. My aaron has cdls and is two since April 2nd so just twelve months between them. I also have a 4yr old girl and 4 month old girl. Aaron is doing very well, eating and drinking orally, quite vocal, but not sitting by himself or standing/walking yet. How is Bens sitting/standing? Aaron’s ptosis is quite bad too so need to get that checked out as I feel it is hindering his progress. Your website is excellent. Keep up the good work.
+1
July 1, 2011 at 5:54 am
Hi Karen! I am Kristina, 16, from Austria, Europe. I also have a friend who has a daughter with Cornelia-de-Lange-Syndrome. I love to play with her, to be around her, to cuddle her. She’s so cute when she smiles! She’s already 24 but the size of an 18-month-old and she weighs 16 pounds.
And: I also have a 19-year-old brother who is handicapped. He has Prader-Willi-Syndrome.
I have a lot of understanding for people who have special needs, I grew up with it. I love to help wherever I can.
I wish your family all the best for the future and a lot of welfare and happiness!
May 5, 2012 at 4:45 pm
dear Karen,
my name is Kerstin, for many years I work as a midwife in a big clinic in Germany. On occasion we look after the parents whose children with a specific feature see the light of the world. Because I take photos for many years, I have decided some years ago to write a textbook for midwife’s schoolgirls, midwives, doctors. Now it is almost ready. I also have the subject “Cornelia de Long syndrome “, because we know, unfortunately, everybody too little about that. I have found your great sides on the Internet, with euerm son Benjamin. Maybe you have desire to write to me. My english is not so good, sorry 🙂
My email adress is: kstoni@gmx.de or you can find me in facebook
many greetings from germany Kerstin
September 9, 2016 at 9:50 pm
Hi, my son Jake has CDLS he is now 29 born 12th Feb 87, Brisbane Australia, looking at your young man reminds me of when he was a young boy, Jake is still very much non-verbal but can sign & spell very well, he gets his message across, has a memory like a elephant [ this guy walked in & Jake said hello David I turned to Eva & asked how long has it been since Jake has seen David, she replied about 8 years] cool hey! it took him about 6 years to eat, 3 to walk he rolled everywhere. he will self harm which is part of the syndrome he picks his finger nails they are right back so he wears gloves to help stop it & he will scratch his forehead the bridge of his nose & chin so its like a GT stripe down the center of his face, [ if he gets stressed ] I have seen him covered in blood from it, he will just smile at me like nothing happen.
I would like to say more but I don’t know if you are still writing here or not. maurie