Jenny's Journey

Message from Jenny's Parents

2009-05-09T12:38:00.000-07:00

We, Barb and Phil, know of no better way to honor Jenny's memory than to help the neurologists and immunologists who continue to investigate the causes of her death. If you know of any cases of young people between the ages of 9 and 30 who have experienced weakening and/or prolonged paralysis, please send a note to this blog. We will forward the information to medical professionals who are investigating these cases. Please note that we are interested in all such cases, regardless of whether they are male or female, or possibly linked or not linked to the HPV vaccine.

Jenny Is Dead, But Her Question Stands

2009-04-13T14:08:00.000-07:00

Barbara Mellers, Philip Tetlock, and Barbara Shapiro

On a sunny afternoon in May 2007, a tearful Jenny told her mother how her seventh-grade gym class laughed when she tripped on a hurdle that everyone else cleared easily. A few weeks later came the odd limp. Gradually, weakness spread; her muscles atrophied; her world shrank.

Jenny’s parents frantically rushed her to an ever wider range of specialists, to no avail. By spring 2008, Jenny was a quadriplegic who could breathe only with machine support. She clung to life for almost a year but she never made it to see another spring.

No one knows exactly when Jenny’s disease began—or what disease she had. World-class neurologists suspect Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). This relentless killer spares the mind, while methodically destroying the body’s motor neurons until the patient body slips into total, irreversible paralysis.

Yet medical opinion is not unanimous. The CDC estimates the odds of ALS among teenage girls at 1 in 3 million, less than those of being struck by lightning. A far more common cause of paralysis among teenage girls is autoimmune disease.

This is why world-class immunologists suspect that Jenny had a potentially treatable autoimmune disorder mimicking ALS, possibly triggered by the Gardasil vaccination – for protection against the virus that causes cervical cancer – that she got in March 2007, just weeks before her hurdle accident.

As if the anguish over Jenny’s condition weren’t enough, we are now inviting added trouble. As you might imagine, merely suggesting a link between a vaccination and subsequent illness polarizes people into feuding camps. So, we hasten to add that we are not anti-vaccine zealots (would we have been so quick to give Jenny a new vaccine if we were?). As professors who use statistics in our everyday research, we know that correlation does not mean causation. We agree that cost-benefit ratios generally favor vaccines. Jenny might be an isolated case in a capricious universe.

But we also see the other side. Jenny could be the tip of a growing cluster of grimly similar cases thus far invisible to regulatory watchdogs. That is why we reported Jenny’s case in spring 2008 to the Vaccine Adverse Event Reporting System (VAERS), the federal database for monitoring adverse events. And that is why we have tried repeatedly—and unsuccessfully—to persuade the Center for Disease Control (CDC) to investigate how many Jennys are out there. Thus far, the CDC insists that Jenny is just an isolated statistical blip. They might be right. But wouldn’t it be important to confirm that hunch?

Remarkably, the CDC drew confident conclusions before it had conducted a rigorous study. It limited its search to the VAERS database—even though its shortcomings are well known to insiders. For one thing, it is a voluntary reporting system that almost certainly undercounts adverse events. Many doctors have even never heard of it. And the rest are busy people who are wary of vaccine kooks. Second, VAERS data are also poorly organized, notably, the reporting form does not even offer an entry for diagnosis.

Finally, the accuracy of VAERS data is questionable. It is the rare entry that says “further information requested”; most entries contain no follow-up information on what happened to the patient including whether she lived or died. It is unclear who, if anyone, is tracking the adverse events and sorting cases into similar clusters. And it is impossible to compute how many of all the vaccinated girls are now ill if the government refuses to reveal how many vaccinations in each lot number were administered (such information is proprietary!).

The CDC does not inspire confidence, so we conducted our own shoestring search to determine whether Jenny was alone. We created a website (jenjensfamilyblogspot.com). Although this website has only drawn 40,000 visitors, it has out-performed the federal government in finding girls ominously similar to Jenny (current score is: Jenny site 2; CDC’s VAERS: 0).

One does not need to be a statistician to see how unlikely it is that these two other girls are the only cases out there—or how frightening it is that we already know of three documented cases of girls (those two plus Jenny) who developed ALS within several months after their vaccinations. After all, if the odds of ALS in teenaged girls are 1 in 3 million and we found 3 in only 40,000, it is very possible that many other of the 6 million girls vaccinated have already developed severe neurological collapse, like Jenny.

Surely, one not need to be a conspiracy theorist to ask: How many catastrophic 1-in-3 million events, all within months of Gardasil vaccinations, will it take to get the CDC to launch a major investigation of possible causal connections?

Vaccination, like national defense, is a public good. Society asks citizens to make small sacrifices for our collective safety. Occasionally, some pay a horrific price. As in war, we should honor the fallen, including those fallen to friendly fire. But, by accident or design, our government has made it unduly difficult to identify the fallen in the war against infectious diseases. Without good data, we cannot have a serious policy debate—and we will never know how many Jennys are out there.

Author Note: Barbara Mellers and Philip Tetlock, the parents of Jenny Tetlock, are professors at the University of California - Berkeley. Barbara Shapiro, M.D., Ph.D. is an associate professor of neurology at Case Western University.

Tributes in Poem

2009-04-08T07:28:00.000-07:00

Two "friends of Jenny" who worked hard to save her life have written poems to commemorate that life. We wanted to share them with you:

Jenny

Fly away Jenny
But don’t fly too far.
Fly to a place
Where you run, laugh, and play
The way you always were -
Unencumbered.
Be the free spirit that you are
The bravest heart
The gentlest soul
The most impish smile.
Fly away Jenny
But stay close to us.
We will never forget you.

The sun is meant to shine for all the day,
from dawn until a distant setting sun -
from careless days of play and precious fun
that pass so quick, yet in our mem'ries stay

The brightness of the morning warms our hearts,
and as the midday heat begins to rise
we look ahead with dreams behind our eyes
and plan our lives based on the ancient charts.

But rarely, will the moon eclipse our star,
and darkness seems to end the day too soon,
so all that's left's a name carved as a rune
invoking recollections time can't mar -

so in the light that follows the eclipse
the stories from before stay our lips.

Thank you, Barbara and Travis, for your lovely words.

Jenny Video

2009-03-31T17:30:00.000-07:00

A video celebrating Jenny's life was played at her memorial service. To download a copy for personal viewing, click here:

http://www.sendspace.com/file/j44a60

PLEASE NOTE: This video is for personal viewing only; do not repost or use for any other purpose.

In Memory of Jenny

2009-03-17T22:02:00.000-07:00

Jenny Tetlock passed away on Sunday, March 15th, from a debilitating form of motor neuron disease. Her life was cut short after a courageous struggle that lasted for more than a year. She left behind her brother, Paul, her mother, Barbara, and her father, Philip. A memorial service will be held in her honor on Saturday, March 28th, at 12:30 pm at the Lafayette Orinda Presbyterian Church followed by a lunch reception. All are welcome. UPDATE: We expect to have enough space to accommodate everyone who wants to attend, but would still appreciate it if you would RSVP to admin@jentet.com so that we know how many to expect.

Jenny often said that she wished the Kensington library had more to offer. In lieu of flowers, please send donations to Friends of the Kensington Library, 61 Arlington Avenue, Kensington, CA 94707. Checks should be payable to Friends of the Kensington Library, with a note on the check or in the accompanying envelope indicating that the donation is “In memory of Jenny Tetlock”.

Final Rest

2009-03-16T19:00:00.000-07:00

Our beloved Jenny died yesterday afternoon, holding her parents' hands, surrounded by love.

OneClick to Save Jenny

2009-03-14T14:04:00.000-07:00

As readers of this blog know, Jenny is 15 years old. Two years ago, she was a normal, seemingly healthy girl. Today, she is a quadriplegic who cannot breathe on her own for more than a few seconds.

Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis. Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS.

Jenny’s first symptoms occurred not long after she received the last of three HPV vaccinations (Gardasil). Her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.

Thousands of vaccine recipients worldwide have reported adverse reactions to Gardasil. But their reports are largely anecdotal, and their reactions have not been confirmed as being caused by the vaccine.

The official US repository for data about adverse reactions to vaccines is the Vaccine Adverse Event Reporting System (VAERS) database. Our concerns focus on the inadequacies of the VAERS database.

Visitors to this blog (which has been visited by almost 30,000 people) have informed us of two other verified US cases of ALS following the Gardasil vaccination – cases that had not been reported to the federal system until we urged the families to do so. To put this in perspective, some at the Center for Disease Control (CDC) estimate that ALS would be expected to occur only once in every 1.6 million teenage girls. About 16 million doses of HPV have been given to young girls. Assuming that each girl receives 3 doses (some might receive fewer), this would suggest approximately 5 million young girls have received the HPV vaccine. Of 5 million girls, we would predict 3 cases of juvenile ALS. However, we already know of 3 definite cases of ALS in these young girls, just through Jenny’s website, and we know of 2 other possible cases through other sources. If this is correct, Jenny could be the tip of a small iceberg of tragically similar, but underreported-to-VAERS, cases. This is why we need to fix VAERS, and we need to fix it now, so that we can track adverse events to vaccines more efficiently and more quickly.

Jenny’s medical condition continues to deteriorate (see www.jentet.com for a summary of her case history). To save her life, Jenny needs a miracle ... the kind that only modern information technology – and the good will of everyone who reads this blog or sees her video – can possibly provide.

You can help Jenny – and other girls like her – by signing the VAERS petition. Please go to http://www.thepetitionsite.com/1/oneclickonelife to sign.

Sweet 15

2009-01-09T22:38:00.000-08:00

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.

It's Been a Tough Month So Far

2008-11-10T22:29:00.000-08:00

November has not exactly been Jenny’s favorite month. On Election Day, Jenny took a nasty tumble onto the floor during a transfer between her bed and wheelchair. She landed hard and broke her right shoulder. Her arm is in a sling, and doctors say we can expect the shoulder to heal in a few weeks. Meanwhile, every change of position is more difficult and uncomfortable for Jenny.

Saturday was even tougher. A mishap with her sip-and-puff breathing apparatus left Jenny in need of mouth-to-mouth resuscitation, which her dad performed successfully. Jenny had to go to the emergency room for a chest X-ray (which confirmed that she did not suffer any injury from the CPR efforts) and for observation to be sure that her breathing was back on track. After a few hours, she was allowed to return home.

Once again, though, Jenny showed her mettle. She promptly resumed watching the Olsen twins DVD (“When in Rome”) that had been in progress before her morning went awry, then devoured generous helpings of some of her favorite foods (stuffing and chocolate milk) while cracking jokes with the family and friends gathered around her. Now, Jenny is looking forward to Thanksgiving decorations for her room (she has requested an inflatable turkey!) and the release of the movie Twilight, based on one of her favorite Stephanie Meyer books.

Here’s hoping that the rest of November lives up to Jenny’s happiest expectations.

We're still having fun ...

2008-10-14T20:06:00.000-07:00

even though some days are tougher than others. Gorgeous Indian-summer weather (and a respite from her nearly endless nausea) allowed Jenny to enjoy a Sunday excursion to the Richmond Marina, with soft ocean breezes, picture-perfect views of the San Francisco skyline and an ever-changing panorama of sailboats entering and exiting the harbor. She adored basking in the sunshine while sharing a deli sandwich with her dad. But, Jenny was equally pleased when she returned home to discover her mom decorating her room with Halloween tinsel, replete with orange metallic jack-o’-lanterns that sparkle whenever the sun catches them. She’s already planning her Christmas decorating scheme – and looking forward to Christmas visits from family and friends.
All of this is possible because Jenny’s condition has stabilized. She is still able to eat (but needs extra nutrition via her g-tube to avoid losing any more weight) and to breathe on her own (although she uses a “sip-and-puff” respirator during the day and a different one at night). And, she is working hard with her physical therapists to preserve and improve the use of her left thumb and forefinger, exert some control over other muscles and retain her range of motion in all four limbs.
Through all of this hard work – on top of the schoolwork she resumed with an at-home tutor in September – Jenny remains amazingly cheerful and optimistic. To be sure, there are hours and even days when the constant challenges seem too much to be borne. But, with a little help from her friends, Jenny always bounces back. And, perhaps, with a little help from a new experimental treatment that she began about a month ago, Jenny will bounce back physically as well. At least, that’s what we’re all hoping and praying will be the case.

Sisterhood in Multiple Guises

2008-08-13T23:19:00.000-07:00

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!

Introducing Alex

2008-07-21T23:27:00.000-07:00

At the top of Jenny’s website is a simple and poignant question: “Am I alone?” Apparently, she is not.

Although the many specialists reviewing Jenny’s case were hard-pressed to name similar cases in their experience, family and friends now have identified at least five strong comparables by creative use of simple searches on the Web to look for children with similar neuropathology. Physicians agree that the medical histories of Jenny and these potential comparables are sufficiently similar to justify a working hypothesis that all of these children are suffering from the same disease.

One case in particular, that of another 14-year-old girl named Alex (http://www.caringbridge.org/visit/angelsforalex), underscores the rich potential of studying data on comparables. Alex’s medical history is strikingly similar to Jenny’s, right down to the instances in which the two families first realized that something was wrong: in Alex’s case, it was her inability to throw a softball with her pitching arm; in Jenny’s case, it was her inability to clear a low hurdle that everyone else in her gym class cleared with ease. Alex’s family and physicians have made her records available to Jenny’s medical team, so that we can develop side-by-side comparisons that may provide insights into their mysterious illnesses. Alex’s situation offers unique research opportunities into possible genetic factors because she has an identical twin sister who thus far shows no sign of the disease that appears to have stricken both Alex and Jenny (although the twin has had other, potentially related medical problems).

Alex’s experience also underscores the urgency of identifying the cause, and therefore possibly a cure, for the disease that she and Jenny seem to share. Alex’s first symptoms appeared in 2005, two years before Jenny’s. Today, Alex not only is completely paralyzed, but is unable to eat or even breathe on her own, as you can see in this heartbreaking video made by her family (http://ca.youtube.com/watch?v=Lq6qotHIiCM).

Keep watching this blog for updates on the search for comparables and the race against the clock to find a cure for Jenny, Alex and every other child suffering from this horrible mystery disease.

The Great Race

2008-07-11T16:39:00.000-07:00

Formula 1 auto races such as the Monaco Grand Prix have both a finish line and a time limit – if no one crosses the finish line within the allowed maximum time, the race is over.

In order to cross the finish line before reaching the time limit in the race to find a cure for Jenny, WE NEED YOUR HELP NOW.

Please scroll down to the blue side bar: "Am I a comparable?" This list outlines the characteristics that Jenny's doctors consider most important to identify other cases that may hold the clue to diagnosing her mysterious ailment - and finding the right treatment to reverse her frighteningly fast decline.

If you know of a potential comparable, please contact us right away at jenjensfamily@gmail.com.

But, even if you don’t know of a possible comparable case, you can still join Team Jenny and accelerate our race for a cure by getting the message about the search for comparables to as many people as possible, especially doctors who might have seen such a patient. Ask everyone to send the link to others, and seek their assistance as well. Together, we can work miracles.

Here is a suggested message for you to use in contacting others about the race to cure Jenny:

Hi,
Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.

If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine (her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness), but doctors are not sure whether Gardasil played any role in Jenny’s illness.

We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/). Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?

The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding an effective treatment.

Time is of the essence because Jenny is now a quadriplegic and is struggling to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.

Setting the Record Straight

2008-07-07T08:42:00.000-07:00

This morning, the CBS Early Show ran a story about Gardasil, using Jenny as the example of a girl who may have experienced an “adverse reaction” to the vaccine. CBS contacted the family; we did not contact them. Family representatives emphasized to CBS’s producers Boxer and Bicknell that we do not want Jenny to become the poster child for the anti-Gardasil campaign and that it is by no means certain that Gardasil caused Jenny’s illness. Rather, our goal in making Jenny’s sad story public is to locate any possible “comparables” to Jenny – which could include girls (and even boys) who have not taken Gardasil, but who have experienced a rapid decline and paralysis that is resistant to the many kinds of treatment Jenny already has received. We are disappointed that the CBS on-air story did not mention the search for comparables and that the online version of the story merely suggests that “Jenny's father hopes a blog he started will prompt other teens with similar post-vaccination problems to come forward.” That is, at best, half the story: Jenny’s family needs to hear about any and all possible comparable cases, regardless of the apparent cause.

To set the record straight, and to get the information so desperately needed to help Jenny, we publish here the full statement that the family gave to CBS:

“The family believes that there may be a link between Jenny’s health and the HPV vaccination – at the very least, the timing of her third Gardasil injection (March 2007) and the apparent onset of symptoms sometime later in the spring of 2007 is suggestive. But, there is no medical consensus on whether this hypothesis is stronger than other possible explanations. A variety of hypotheses relating to the HPV vaccination remain in the running, and the family is concerned that these vaccine-related hypotheses have not yet gotten the full investigation required to accept or reject Gardasil as a potential explanation (in full or in part) for Jenny’s condition. The family has an understandable and strong desire that all such possibilities be thoroughly investigated immediately, as Jenny’s life hangs in the balance.

“The desperate need is to identify 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 (apparently, neurodegenerative diseases such as juvenile-onset ALS are much less common in females, which is part of what makes the nature of Jenny’s disease so mysterious). 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.

“The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life. Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, the family appeals to your viewers to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.”

Fun with Jenny – Chapter 1: Stars, stripes and Jenny forever!

2008-07-06T00:06:00.000-07:00

On National Jenny Day, aka the 4th of July, we kicked off our campaign to fulfill Jenny’s wish (“let’s just try to have some fun”) with a star-spangled cruise on San Francisco Bay. Family and friends gathered at the Berkeley Doubletree Hotel, where Jenny held court before boarding the Admiral Hornblower just after 7 p.m.

The first stretch of choppy water tested the skills of our seaworthy steward, who toted trays of hors d’oeuvres up and down the stairs linking the two decks without missing a step and poured red wine into teetering glasses without spilling a drop on the immaculate tablecloths. But, our competent captain soon brought the 60-foot-yacht into calm seas just off Treasure Island to reveal the evening’s well-kept surprise: a water-cannon salute to Jenny from a San Francisco fire boat, arranged by the Make-a-Wish Foundation. (No photo can fully capture the awestruck delight on Jenny’s face as she watched this extravaganza from the comfort of her Bay-view wheelchair seat on the yacht’s main deck, but we’ve posted one to give you a feel for what you missed.) Later that night, Jenny asked whether the Mayor of San Francisco gets similar salutes. We think she’s one up on Mayor Newsom!

The fun was by no means at an end. Jenny’s guests enjoyed delicious treats (including the world’s yummiest chocolate-covered strawberries) and spectacular views of the San Francisco skyline through sunset-tinged fog, followed by teasing glimpses of Oakland’s pyrotechnic display as our captain repositioned the Admiral Hornblower near the end of the Berkeley pier. Then, Jenny marveled as a succession of fireworks burst into brilliant color overhead, seemingly so close that one could reach through a window and catch a falling spark.

In typical Jenny fashion, however, she seemed to take just as much pleasure in being surrounded by the many loved ones who had traveled from near and far to take part in this special voyage. And that made this trip the memory of a lifetime – not only for Jenny, but for each and every one of us who had the privilege of sharing her joy.

Heartfelt thanks to all who contributed to the magic of National Jenny Day, including the Make-a-Wish Foundation, everyone involved at Hornblower Cruises and the staff of the Doubletree Hotel. You’ve set a high standard for the ongoing campaign to “have some fun.”

Update on Jenny

2008-06-30T14:05:00.000-07:00

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 jenjensfamily@gmail.com 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. jenjensfamily@gmail.com

Latest update on Jenny (6/26/08)

2008-06-26T10:51:00.000-07:00

It was the best of times, it was the worst of times...

Dickens could have been writing about Jenny’s last weekend. Saturday June 21st stands out as one of the best of times – given the limits that her disease has imposed on Jenny’s activities. Now that Jenny is off Cytoxan (an anti-cancer drug that was used to suppress her immune system, on the theory that Jenny’s own body is attacking the nerves that send signals to her muscles), mingling with the public indoors is not the life-threatening risk that it was just a few weeks ago. So, on this best of days, Jenny went with her family to see Get Smart at a local movie theater, and followed that treat with a wheelchair “walk” at the marina to watch the kites flying high in the stiff breeze.

Unfortunately, Sunday June 22nd was another of the worst of times. Jenny couldn’t seem to clear her throat all day, and had to be taken by ambulance to the hospital, where doctors discovered that she was suffering from a toxic buildup of lithium – a drug she has been taking because there is some experimental evidence it might be effective in treating ALS and other neurodegenerative diseases. (Several doctors believe that Jenny has a variant of ALS (aka Lou Gehrig’s disease) that only affects the lower motor neurons.) The lithium toxicity is abating, but Jenny is still in the hospital, with a nasal-gastric tube to supply much-needed nutrients and fluids. She hopes to return home tomorrow.

Jenny’s future holds too many Sundays and not enough Saturdays. Her best chance to halt the rapid downward progression of her disease is to find one or more elusive “comparables” near her age (and probably female) who have experienced symptoms similar to Jenny’s. The hope is that their medical history, added to Jenny’s, may provide the insight necessary to identify a treatment that could extend her life and, if that’s still possible, point the way toward at least partial recovery of the physical vitality that she possessed as recently as a year ago.

Issues Highlighted about CISA investigation

2008-06-22T22:45:00.000-07:00

It has been clear for months now that CISA has no intention of investigating the HPV vaccine question aggressively in Jenny's case--or perhaps in others. Meanwhile Jenny's condition gets graver by the day . So, posting a debate about the quality of other CISA investigations is becoming necessary. The concerns fall into the following six categories:

(1) Gardasil was the vaccine that Jenny received shortly before symptom onset--not Menactra. It is unclear therefore why her case was directed to a doctor who had researched GBS-Menactra connections. Even if the adjuvants were identical, the VLPs (hypothesized to be one possible disease trigger) are different. Perhaps most importantly, as the FDA warning letter of April 28, 2008 to Merck on manufacturing process violations reveals, there are grounds for concern about the quality of the lot numbers of Gardasil that our Jenny may have received - grounds that could extend to either the adjuvant or the VLPs.

(2) Even if the correct vaccine had been investigated in the VAERS database, it is unclear that any effort was made to contact MDs who treated the most potentially similar cases. Was such an effort made? And did it take into account such hypothesized pre-existing vulnerabilities in Jenny's case as the presence of pre-vaccination autoimmune diseases (such as pityriasis lichenoides in Jenny's case) and genetic or mitochondrial predispositions (such as a maternal line that includes tauopathy in maternal grandmother and severe autism and seizures in a maternal cousin)

(3) Insofar as Jenny's symptoms appear to have unfolded more gradually than those for most cases of GBS, and insofar as it is hard to set an exact date of onset for Jenny's symptoms (you can apparently lose quite a few motor neurons before it becomes apparent to the untrained eye), there is a real danger that parents and MDs may not link the vaccine to the later emergence of relatively full-blown ALS-type symptoms. Was any effort made to determine whether there has been a spike in motor-neuron-disease symptoms among girls/adolescents in a broader database that does not require perceived possible linkages to vaccines - and then to link back to possible vaccination antecedents? The base rates for MND among girls in Jenny's cohort are extremely small - so this would require access to a large database (one of the reasons we have extended the search for comparables to Jenny's case cross-nationally).

(4) At earlier stages of Jenny's illness - as late as January 2008--she would have probably been classified as some form of GBS (MMN or motor variant of CIDP were the diagnostic bases for the early treatment decisions). It is especially critical therefore that VAERS GBS reports that leave outcome ambiguous or dangling have follow-ups to determine whether initial report captured only the earlier phases of a longer-term deterioration. Was any such effort made in the initial investigation?

(5) Apparently at least one member of the CISA committee was under the misapprehension that it was "a fact" that the onset of weakening was 45 days after the vaccination. We are curious where this fact originated. We have learned the hard way that measuring the rate of loss of strength is amazingly hard: even when Jenny has been under intensive medical scrutiny, there have been diverging assessments of the rate of her decline, and even over whether she has stabilized at various points. And we have always known how much harder it is to quantify retrospectively the onset and rate of weakening in a time period when one did not remotely suspect that a seemingly healthy adolescent girl was weakening. The new CISA committee should be informed that the exact onset of weakening and functional form of the weakening over time is uncertain but that reasonable guesses would date it back to the spring of 2007. (To illustrate the absurdity of positing a known date for an illness of Jenny's sort, suppose that our daughter has been losing motor neuron control at the deeply depressing rate of about 5% per month since the last vaccination. What percentage of parents would notice such a decline in their teenage children within the first one or two months--and if they did notice it, what percentage would attribute their observations to mood or minor illness or...?)

(6) Finally - and we realize this concern is not peculiar to Jenny's case - VAERS is likely to undercount claims due to a mix of factors, including the voluntary nature of the reporting and the effort it requires from busy professionals and the likelihood that many people may not notice the temporal link between vaccination and onset of symptoms (obviously this becomes more problematic, the greater the delay--per points #3,4 and 5). Overall, this undercounting means there will often be a lag in attaining statistical significance even when there is a causal relationship. Moreover, even with this obstacle, the Gardasil-GBS covaraition appears already to have passed statstical significance. Were any statistical analyses conducted with respect to Gardasil?

The follow up has been disappointing and we continue to struggle for answers.

2008-06-06T09:33:00.000-07:00

Welcome to the Family Blog for Jenny.

Jenny is a 14 year-old girl who lives in Northern California.

Over the last year, she has gone from being a fully healthy 13 year-old to being nearly completely paralyzed. She retains movement only in her neck and mouth and faintly in her left hand.This rapid decline in motor ability has understandably shocked and concerned us [her family]. We have responded by working with the best doctors in the field, fighting continuously to reach a diagnosis and find treatments.

Despite the best efforts of an extremely talented array of medical professionals, we have not been able to stop her decline. Doctors don't know for sure why Jenny got so sick but some think it may be connected to the Gardasil vaccinations she got (last one in March, 2007) and the weakening that seemed to start in spring and gradually built up. One sign was in April 2007 when everyone in her PE class laughed at her because she couldn't jump a hurdle they considered really puny. It is hard to say when the weakening started but by summer she had a terrible limp.

One of the major things that would help her doctors figure out what to do is to find other people like Jenny (called "comparables")--people that share her medical condition and perhaps have had luck with certain treatments.

We are creating this blog to aid us in our search for comparables. If you think you may know a comparable, we urge you to check out the comparable traits in the sidebar and email us at jenjensfamily@gmail.com. Even if you do not know a comparable, feel free to leave a comment of support or link to any information you think might be helpful for us.

Thank you so much.

Jenny Then

Jenny crouches near a statue about a year ago

Jenny Now

Jenny propped up in bed using remaining finger movement to control mouse. The facial swelling is due to steroids