Jenny continues to have good and bad days. Yesterday, she went to see “The Sisterhood of the Traveling Pants 2” to celebrate a day with lower than normal nausea. On Monday, one of her doctors said Jenny seemed to have stabilized, to which her dad responded that, at this rate of reduced deterioration, Jenny may live to be 100!
So, let’s all keep hope. Jenny’s doctors are trying a number of experimental medications (e.g., hydroxyurea, which is in clinical trials) and have ordered further tests to see if they can nail down Jenny’s ailment (including a pet scan today, which led an amused Jenny to remark: “I guess I am officially a pet now!”). They are not giving up the fight, and neither is she.
Ever since Jenny’s blog started, highlighting the need for comparables, the response has been exponential. Our first clear comparable was Alex, who will turn 15 on August 22nd and whose story we talked of last time.
Over the past 6 weeks, we have found several more close comparables from all around the world, most of whom have been diagnosed as having a rare, rapidly progressing form of juvenile ALS (aka “Lou Gehrig’s disease”). Some, like Haley, are still hoping for a cure. Haley’s story is similar to that of Alex and Jenny. Her first symptoms started at the age of 16 (fall 2007), and by May of this year, Haley was wheelchair bound.
Other families are dealing with the fact that their daughters did not survive to see a cure: Emily (onset age 12: died 18 months later with her autopsy showing upper and lower motor neuron degeneration, consistent with ALS), Janine (onset spring 2000; died December 2001), Tanya (diagnosed at 18 in Feb 2002; died 5 months later on July 11, 2002) and Sarah Beth (diagnosed summer 2007; died April 10, 2008 at age 22). Our hearts go out to these families, as well as our thanks for being so generous in sharing information about their daughters’ experiences with this deadly disease.
Clearly, there are more children out there who have suffered from, or are suffering from, this mysterious and aggressive neurological disease. Identifying them is key to finding a cure for Jenny, and preventing the disease in others.
The response to our request for alternative treatments also has been overwhelming. Thank you all so very much. We are not actively following up on all of these suggestions at the moment as Jenny’s doctors feel that she should try one thing at a time. However, we have all of your offers of help and advice, and we really appreciate it.
Keep Jenny in your thoughts and send her all your good wishes telepathically!