|Often, parents of prospective rib candidates and newly accepted patients have lots of questions that are best answered by other families who have already been involved in the program. Over the years, many of our families have become closely interconnected, and maintain an informal support network which really seems to help everyone better deal with the unusual and intense circumstances surrounding their children's' medical conditions and treatment. It is especially helpful to gain the perspectives and insights of someone whose child has the same or a similar disorder as your own--these parents have often gathered considerable information about the disease itself, the nature of caring for a child with special medical needs, resources for more information and/or opportunities for financial and health care assistance. Moreover, having been through experiences that only a parent can understand, families of titanium rib kids can share these valuable experiences and provide a sounding board for others in a way that physicians and medical support staff cannot.
Here, you will find links to email addresses of such families who have made themselves available to personal inquiry.
Please bear in mind that these families have granted special permission to be listed, and that all information gathered in the titanium rib study is kept confidential by the study investigators and medical and research staff at all times. Please be sensitive to the privacy of these people, contacting them only with serious inquiries, and try not to ask questions that might be offensive or inappropriate or that you would not feel comfortable discussing yourself. Technical questions about surgical procedures, medical treatment, evaluation for treatment, study details, etc, should be directed to the rib team physicians and staff.
|TITANIUM RIB FAMILY NETWORK|
|Parents Child Implant # Date|
Robert and Becky Picklesimer Robert Kenneth 136 07/31/2001
Louisville, Kentucky Born 10/05/2000 San Antonio
Phone (502) 671-7919 Jeunes Syndrome
Web Site http://www.picklesimers.com
|This Web Site was last updated on January 16, 2002|
Mike and Carmell Burns Braydon 137 08/15/2001
Utah Born 05/31/1995 San Antonio
Phone (435) 563-8030 Vacterl Association
Web Site http://pages.ivillage.com/carmellb/myfamily/id11.html
Arlene Lambert Zoe Erin 108 08/02/2000
Plymouth, Pennsylvania Born 02/26/1998 Boston
Phone (570) 779-1608 Vaters Syndrome
Web Site http://zoeerinlambert.faithweb.com