At the top of Jenny’s website is a simple and poignant question: “Am I alone?” Apparently, she is not.
Although the many specialists reviewing Jenny’s case were hard-pressed to name similar cases in their experience, family and friends now have identified at least five strong comparables by creative use of simple searches on the Web to look for children with similar neuropathology. Physicians agree that the medical histories of Jenny and these potential comparables are sufficiently similar to justify a working hypothesis that all of these children are suffering from the same disease.
One case in particular, that of another 14-year-old girl named Alex (http://www.caringbridge.org/visit/angelsforalex), underscores the rich potential of studying data on comparables. Alex’s medical history is strikingly similar to Jenny’s, right down to the instances in which the two families first realized that something was wrong: in Alex’s case, it was her inability to throw a softball with her pitching arm; in Jenny’s case, it was her inability to clear a low hurdle that everyone else in her gym class cleared with ease. Alex’s family and physicians have made her records available to Jenny’s medical team, so that we can develop side-by-side comparisons that may provide insights into their mysterious illnesses. Alex’s situation offers unique research opportunities into possible genetic factors because she has an identical twin sister who thus far shows no sign of the disease that appears to have stricken both Alex and Jenny (although the twin has had other, potentially related medical problems).
Alex’s experience also underscores the urgency of identifying the cause, and therefore possibly a cure, for the disease that she and Jenny seem to share. Alex’s first symptoms appeared in 2005, two years before Jenny’s. Today, Alex not only is completely paralyzed, but is unable to eat or even breathe on her own, as you can see in this heartbreaking video made by her family (http://ca.youtube.com/watch?v=Lq6qotHIiCM).
Keep watching this blog for updates on the search for comparables and the race against the clock to find a cure for Jenny, Alex and every other child suffering from this horrible mystery disease.