Good news first: Jenny is home from the hospital and seems to be stable for the moment.
Bad news: Jenny is even weaker than before, and no longer is able to use her left hand in a meaningful way. This is especially disappointing because she just received a new, more powerful motorized wheelchair with controls that had been tailored for her to use with her left hand. It looks as if those controls will need to be reconfigured so that someone else can “drive” the chair for her from behind.
But, although her body seems to get weaker each day, Jenny’s spirit remains strong – stronger than any of us can comprehend, as is clear from a conversation she had with her father on Sunday. In his words:
"[Jenny] awed me with her compassion today: she could see I was close to crying and she told me to come over and hug her – and she then looked me right in the eyes and said matter-of-factly: 'don't worry – it will soon be all over.' I felt simultaneously struck with grief but also proud of her courage. I will remember that moment until the day I die (indeed, especially on the day I die)."
"I burst into tears and declared we were doing all we could to stop the disease – she smiled knowingly and said: 'let's just try to have some fun.'
Spurred by this comment, we (Jenny's family and friends) have embarked on a crusade to fulfill her wish to just have some fun. Keep watching this blog site for upcoming stories on “fun with Jenny”!
Our new focus on fun doesn’t mean we’ve stopped doing all we can to cure Jenny’s illness – an effort that includes, most importantly, continuing to search for other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?”) and contact us at firstname.lastname@example.org if you know of anyone who might fit the description. And, get the word out to any doctors you know who might have come across cases like Jenny’s in their practice. Finding comparables – fast – could hold the clue to curing this debilitating disease. email@example.com