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.
Jenny was a 15-year-old girl who lost her battle to a rapidly degenerative neurological disease on March 15, 2009. To save other Jennies, please sign the VAERS petition at http://www.thepetitionsite.com/1/oneclickonelife
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Am I a Comparable?
To aid in finding a cure for the disease that took Jenny's life, we are still collecting information on any “strong comparables” to Jenny’s case, where a comparable is defined as someone:
(1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs,
(2) for whom the onset of the condition began before adulthood, and
(3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if
(4) the individual were female rather than male. And, it would certainly be of interest if
(5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature).
But, we would like to hear about anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny's case and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
(1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs,
(2) for whom the onset of the condition began before adulthood, and
(3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if
(4) the individual were female rather than male. And, it would certainly be of interest if
(5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature).
But, we would like to hear about anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny's case and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
15 comments:
happy birthday jenny! to many happy ones in the future!
sincerely,
mahendra
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.
Happy birthday Jenny, and congratulations on getting your new pet!
Happy Birthday Jenny!
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
Michigan
Happy Birthday dear Jenny!
Have fun with your parakeet, and have a good new year; hang in there!
subtypeHi Jen! All of us at DEF wish you a very happy and healthy birthday!...You are a capricorn-they are very hardy people..my 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
Happy Birthday Jenny from the East Coast! We are praying for the success of this new treatment. (((hugs)))
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.
Happy Birthday Jenny! Definitely enjoy the parrot...
Best wishes,
Aimee
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.
Linda
lindafgibson@tx.rr.com
blog: http://linda-frances.blogspot.com/
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...
Happy belated birthday, Jenny, from a student in your dad's department! Best wishes for many many more!
Abby
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
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
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