People
Here are the stories of some real people living with Carpenter Syndrome.
Tamara

Tamara's seems to be one of the first real faces anyone sees when researching Carpenter Syndrome. She has an adult daughter and now a grandson born in 2013, who to Tammy's great relief, were both born with no obvious signs of the condition. Tammy is always willing to help in any way she can, gracefully fielding even the most odd questions, like one I asked a few years ago... "Will you send me pics of your hands and feet?" when my son was little and I was curious about what to expect as he reached maturity. My questions were presented with love and respect, and thankfully, my curiosity didn't seem to bother her in the least.
Please click on the picture above to read a little about her in a past CCA newsletter, which will open a PDF in another window. She's on page 3.
Please click on the picture above to read a little about her in a past CCA newsletter, which will open a PDF in another window. She's on page 3.
Connor

Connor is a remarkable teen (born in 1997) with dedicated and loving parents. He is crazy about all things electronic, Legos, Transformers, and sports, with one of his passions being baseball... and it seems he is quite good at it! His favorite team is the Orioles, and he actually got to spend a day with them at Fantasy Camp in 2013! Way to go, Connor!!
His father has set up a page to keep his adoring fan-base up on his life. Please click on the picture on the left to go there and read his story.
His father has set up a page to keep his adoring fan-base up on his life. Please click on the picture on the left to go there and read his story.
Abby

Abigail is the youngest of three children born into a loving Midwestern family in 2007. Her parents found out at their “routine” 22 week ultrasound that all was not what it seemed with the newest family member, but it wasn’t until she was a month old that a geneticist was finally able to give her family a diagnosis of Carpenter Syndrome, a few much-needed answers, and most importantly, a little peace.
Her story will be added soon.
Her story will be added soon.
Shan

Shan is a LSW who enjoys working with the developmentally disabled in the Mideast.
Jacob

It seems nothing is impossible for Jacob!
Jacob, who was the inspiration for this website, was born in 2000. One of the things I've most wanted to instill in him, right from the start, was the ability and confidence to advocate for himself. So, to my delight, he has informed me that he wants to tell his own story here! It's a work in progress and no matter how hard it will be (we home-school), I won't edit or critique his work in any way. I had even asked him to hand write it (to scan and upload) rather than type it, but he chose not to do it that way. In the meantime, I, his mother, will tell you a little about life with this very special young man if you click my link below!
To read Jacob's blog, please click here.
Click here to read Laura's (Jacob's mom) blog.
To read Jacob's blog, please click here.
Click here to read Laura's (Jacob's mom) blog.
Something To Think About
I don't know if the Chiari Malformation (#5 on the list of the 10 weirdest medical conditions) and Carpenter Syndrome are in any way related but found it interesting that both Tammy and Connor's mom have this unusual condition. Also, unknown to me at least, is whether or not Scoliosis is syndromic but both Jacob and Abby have it.
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Last update:July, 2013
April, 2022 |