Most people know Ryan Dempster as an all-star pitcher who once played for the Cincinnati Reds and now takes the mound for the Chicago Cubs. Dempster’s real heroics, however, are not found in the blazing speed of his fast ball.
Through the Dempster Family Foundation, Dempster and his family devote time, energy and financial resources to help sick children and their families battle a devastating and often fatal disease. During a nationwide awareness tour that includes a colorfully decorated bus (envision a giant image of Dempster hurling a hardball) and interactive displays about what some call 22q, the foundation stopped for two days at Cincinnati Children’s.
The medical center launched a center of excellence for the disease in 2009, as it can be extremely complex to manage. The illness goes by many names, none of which adequately describe the illness’s debilitating nature – DiGeorge syndrome, Velo-cardiol-facial syndrome (VCFS), and 22q11.2 deletion syndrome (for the chromosome where the gene deletion occurs).
Newborns with the disorder – such as Dempster’s daughter, Riley – can suffer from an incredible variety of problems, not just those associated with the heart and area that connects the pharynx and nasal cavity. Over a lifetime, the list includes any of 180 potential symptoms ranging from neuromuscular effects, heart defects, breathing problems, susceptibility to infection, learning, and behavioral problems.
Perhaps one of the most unique, and difficult symptoms is schizophrenia, which occurs in as many as 20 percent of adults with the condition. Add in a risk for bipolar disorder and depression, and the overall risk for mental illness nears 30 percent. It’s the only genetic condition in the world that carries such predisposition for schizophrenia, but awareness of the risks and symptoms make successful management much more likely.
This is true of many of the problems associated with this condition. That is why the Division of Human Genetics at Cincinnati Children’s has supported Drs. Howard Saal and Robert Hopkin in establishing a 22Q-VCFS Center at CCHMC. The condition is complicated, and there isn’t a cure for a chromosome deletion, but with the right professionals in the right place, it can be managed very well.
Obviously the need is great for research into the disease, its triggers and possible new treatments. So is the ability for families to know where they can go for expert medical help and gaining access to the family support mechanisms that can make a huge quality-of-life difference. The Dempster family even went so far as to set up what might be described as the in-home equivalent of a neonatal intensive care unit for their daughter, complete with around-the-clock expert care.
The awareness tour visit to Cincinnati Children’s included a workshop for parents at the medical center where they learned more about managing the disease and new developments on the research and treatment front. That happened Tuesday night (Aug. 23). Next is a family gathering and picnic today (Aug. 24) at Vineyard Community Church near the Tri-County Mall. Interesting to note is that the tour is spending one day in the other the cities it visits, but the foundation decided to spend two at Cincinnati Children’s, so they could meet with members of the 22Q-VCFS Team here as well as parents.
Besides increasing awareness, the main goal of Dempster’s foundation is helping charities and organizations that in turn help children with 22q through monetary grants and support programs. This includes supporting research for early detection of the disorder, and programs that provide education, physical therapy and activity to promote long term well-being.
More information about the foundation can be found at www.dempsterfamilyfoundation.org. Bettsy Leech, 22Q-VCFS Center Coordinator at Cincinnati Children’s can be reached at (513) 803-1884 or firstname.lastname@example.org.