In July 2013, Jacob (13) and I (his mother) traveled almost 3,000 miles across the country to meet Connor (16) and his large, loving family. Please click on the picture below to read the article that appeared in Connor's local newspaper a few days after our arrival. I don't know who all else's eyes the boys' comments brought tears to, but at one point I had to walk away before I lost all semblance of control. What an amazing experience the whole trip was!
Carpenter Syndrome website QR (quick response) code.
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Shriners Children's Hospitals provide free orthopedic and burn care to children under 18 in state of the art facilities.
Ronald McDonald House Charities offer free or inexpensive lodging, even for extended periods when needed, for families with children receiving treatment in medical facilities near each house.
Kiwanis Family House is a non-profit organization dedicated to providing a temporary home-away-from-home for families of seriously ill or injured children being treated at the UC Davis Medical Center in Sacramento or at Shriners Hospital.
Children's Craniofacial Association is a national nonprofit organization dedicated to improving the quality of life for people with facial differences.
This website offers a wealth of information and support to parents of children with disabilities, and many links to the professionals who work with them.
This is a great resource for anyone wanting to make a personal connection, often in real time, with real people whose lives have been affected by Carpenter Syndrome.
Or email us at CarpentersSyndrome@groups.facebook.com
The Jorge Posada Foundation is a non-profit organization established by the New York Yankees’ All-Star Catcher, Jorge Posada, and his wife, Laura. Their son, Jorge Luis, was diagnosed with Craniosynostosis when he was just ten days old and has undergone eight major surgeries to correct the condition.
An amazing amount of information about Carpenter Syndrome and useful resources can be found here.