On Monday, Jenny will turn 15. Her family and friends will gather to celebrate a milestone that some doubted she would reach. And Jenny will once more enrich our lives, just as she does every day.
Just two years ago, on Jenny’s thirteenth birthday, there was no sign of the disease that has robbed her of control over her arms and legs and denied her the ability to breathe without assistance. One year ago, on her fourteenth birthday, we were alarmed by the inexplicable weakening of her legs and arms – but Jenny still could feed herself, walk a short distance with the aid of a walker and drive her electric scooter, and chatter endlessly. We never imagined then that we would give almost anything today for Jenny to be as “well” as she was last year at this time.
But Jenny is still with us – and she still loves life. She adored having the Christmas tree in her room, surrounded by gifts, with lights, and Frosty the snowman. And she had a terrific time going out to get gifts for her family. She also went to see the movie Twilight – even though it took two attempts for Jenny to make it through the whole movie. A Twilight poster holds pride of place in her room where the Christmas tree once stood.
The absence of the tree has made room for Jenny’s new companion, Pokey, the parakeet. Pokey appears to share Jenny’s preference for Hannah Montana because, after several silent days, Pokey burst into song while Jenny was enjoying the “Best of Two Worlds” concert video. Jenny also keeps her grandfather’s dog, Ching, overnight for company and hopes to add to her menagerie this summer. She’s been making plans for a country home in the Sierra foothills, complete with horses, cows, pigs, ducks, swans, more dogs (including a Great Dane and a poodle) and some talking parrots.
Jenny’s hope of seeing those plans come to fruition depends on finding a treatment that will halt her decline. Right now, that hope is pinned on the possibility that Jenny has an auto-immune disease, rather than juvenile ALS. She will soon start a new treatment, and if successful, that treatment should yield some improvement in the next three or four months.
Please join us in wishing Jenny a happy 15th birthday – and many, many more.