Friday, January 9, 2009

Sweet 15

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.


Mahendra said...

happy birthday jenny! to many happy ones in the future!


K Fuller said...

Happy Birthday from the Fuller's in Yuba City. You are still on our thought board and we think good thoughts for you everyday.
Happy New Year, and may the new treatment be exactly what is needed to heal you.

Jennifer said...

Happy birthday Jenny, and congratulations on getting your new pet!

Lauren said...

Happy Birthday Jenny!

lprovenzano said...

Happy Happy 15th Birthday Jenny! You and your family are in our every day thoughts and prayers! You are a very brave young lady and an inspiration to many. We join your family in the ray of hope for a possible auto-immune disorder! Our angel boy Bobby Suvoy looks over you daily.

The Suvoy and Provenzano Families

caydie said...

Happy Birthday dear Jenny!
Have fun with your parakeet, and have a good new year; hang in there!

Dr. Diana said...

subtypeHi Jen! All of us at DEF wish you a very happy and healthy birthday!...You are a capricorn-they are very hardy daughter danica had a birthday last week too....I am sending you 2 musical Hannah Montana pens.....wish I could see 'Twilight' but I have eye problems driving at night...will have to wait till it comes out in DEV....let me know if you want or need anything!....A Big Giant Hug!
Diana Pickett

Domestic Superhero said...

Happy Birthday Jenny from the East Coast! We are praying for the success of this new treatment. (((hugs)))

Kristin Johns said...

A very happy birthday to you, Jenny. Although I don't know you I was very moved by your story and your courage, and I will be sending many thoughts and prayers your way as I watch my own daughter tear through the Twilight books.

Here's hoping that 2009 will bring you only the best of news.

Aimee said...

Happy Birthday Jenny! Definitely enjoy the parrot...

Best wishes,

Linda Frances said...

Happy Birthday Jenny - we happyly celebrated my daughter's birthday last November - she is a little older than you are but all birthdays are special - - -

I "talked" with your Dad by way of email before Christmas - my computer had to be cleaned out and all my email address were lost so Happy Birthday to you and have your Dad contact me again -

My daughter Marcie does have ALS - she has had it for 15 years being DX when she was only 23.


Kel said...

Hello. I am an East Bay mom just reaching out to let you know that behind the scenes there are so many concerned parents and friends that are hoping for success with your health challenge. I am sending you strength and special thoughts to see your health improve. The Twilight series and movie was not familiar to me until we "happened" on it - Fun! Take special care...

Abby Wood said...

Happy belated birthday, Jenny, from a student in your dad's department! Best wishes for many many more!


Beth said...

Was transverse myelitis ruled out?
My friend in her early 20's came down very suddenly with it. They think it was the result of a virus she got from her infant son. She became completely paralyzed overnight but she did respond to steroids.

Happy Birthday Jenny!
Best of Luck!
Beth in NC

Jenny said...

Transverse myelitis has been ruled out. Other possibilities considered, but excluded based on test results, include Lyme disease, mitochondrial disorders and SMA.
The exact nature of Jenny's disease remains a mystery.
Thanks, Beth and others, for your diagnostic suggestions.
Jenny's family and friends