Monday, June 30, 2008

Update on Jenny

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 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.


Anonymous said...

I am keeping Jenny and your whole family in my thoughts and prayers.

Im so sorry for what Jenny is going through. This vaccine is doing more harm than good. My daughter has had side effects from it too.

Dawn said...

I do hope that you were able to get ahold of Dr. Sherri Tenpenny. Jenny is in our prayers!

Jacqueline said...

I hear your words, all of them, with understanding and clarity. I'm thinking about you all.

To say your words, Jenny, are an inspiration sounds so cliche and like a silly Hallmark card but... it is so true in this case. The idea of embracing "fun" seems like such a carefree idea in the midst of moments that could possibly be filled with fear. For you to have the wisdom to call upon the FUN in your heart is remarkable. Please know that you have moved me to realize that sometimes I simply forget to squeeze in MORE FUN in my life. I started this photo group on Flickr called LET'S HAVE FUN!!! in your honor. In doing so I realized that I simply don't have many photos lately that invlove FUN- which means I simply haven't been making time for it and that's got to change! Right? As a matter of fact I've already got some things in mind that I know would be a great time. So, even though it may have seemed like a simple gesture to lighten your Dad's heavy heart a bit- you've done wonders for many of us with your words, wisdom and strength in that moment and so many others.

I hope for loads and endless amounts and gobs of FUN for you and your family.

Magpie Girl said...

Dear Jenny,

My doctors wants my daughters, who are just 8 and 10, to get the HPV vaccine. We have a history of neurological issues in our family too, but the doctor didn't seem worried about that.

Your story and your website have helped me plant my feet firmly in the "no" aisle. I feel like you just saved my children. I'm so sorry you are sick, and I am so grateful you are telling your tale.

We are commited to having some fun in the name of Jenny! I'm putting up a picture on teh Let's Have Fun flickr site right now!

Shine, Jenny!

Gratefully Yours,


Anonymous said...

Thank you for sharing your journey, especially the information on the vaccines. My grandma died of ALS, and it's very good for me to know of the possible connection -- my daughter is 4, and we're already very cautious with vaccines (my cousin was autistic, and they're fairly certain the vaccines played a role) -- but this is such important information!

My thoughts and prayers to all of you, and hopes that you can truly have some fun times together!!

*MichiganMomma* said...

Just wanted you to know that your story is, indeed, getting out there. People are praying - I honestly believe "comparable" can be found as the word is spread.

Thank you for sharing your story. Your family will remain in our prayers~

Lotta said...

We thought our son was going to need ADHD medication and found that by giving him Threelac (a pro-biotic) we got our "normal" son back. I know there are some other natural treatments parents of children that have autism and other disorders they feel were the result of vaccines are doing with success.Here's what I've heard of...

Deborah Blake said...

Hi Jenny,

You sound like a terrific girl, and I am so sorry you are going through this. I have two nieces your age who are among my favorite people, and I would be heart-broken if something like this happened to them.

I wish I had a clue about your illness, but I don't. I do have a suggestion though, based on my own experiences with serious illness. I got sick when I was 24 (I'm 48 now, in case you wondered). It took 7 years of exhaustion, pain and other bizarre symptoms to be diagnosed with chronic fatigue syndrome and fibromyalgia.

The doctors had no clue what caused it, or how to treat it. (Is this starting to sound familiar?)Half the time they blamed me, saying it was all in my head, just because they couldn't find an easy solution.

Now, obviously, this isn't the same situation as yours. But my solution may have merit for you. You see, I finally gave up (for the most part) waiting for doctors to help me, and I turned to "alternative" medicine. I used acupuncture, cranial sacral therapy, hypnotherapy and energy healing (Reiki and such), and in the end, I got better. These things may seem strange, but in truth, they have been used for many years (in the case of acupunture, thousands of years) to help the human body heal itself.

Modern medicine broke you, so it may take non-traditional medicine to help you heal.

Either way, know that you are in my thoughts.

Much love,

Amy said...

We've sent your message out wherever possible, and we've also kept your words close at heart. There are circles beyond circles who are thinking of you.

Sue's friends, Amy David Katie Michael

Thea said...

Hi Jenny,

I’m a Windrush parent that unfortunately didn’t get to know your family during your time at school. I also work nearby at the Family Resource Center at Children’s Hospital. I have circulated your story in my circles in the hope of a miraculous connection and speedy cure. I can identify with your parents being fierce knowledge warriors and I also applaud your instincts to live life fully – have fun. I’ve walked alongside friends and family members lost too soon to ALS and AIDS as well as many children and teens challenged inexplicably by cancer or genetic fluke diseases. Some have thrived. Some have not. On this 4th of July, I hope you can find mirth amidst the tragic and escape the losses whether by music, movies, animals, friends, friends of animals and family, always family. Ask for your whims. Delight in the little. You are loved. There are big circles of people who care and are willing to respond.

Denise said...


I'm so sorry that this happened to you. It's obvious that you are an amazing young woman. I will keep you and your family in my prayers.