Monday, July 21, 2008

Introducing Alex

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 (, 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 (

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.


Jan said...

Dear Barb, Phil, and Jenny,

I just want you to know that we are all thinking of you all the time.

Jan, Mario, Eva

Amanda said...
This comment has been removed by the author.
Peter McGraw said...

Jenny and family,

I have fowarded you blog on to others. In the meantime, I am glad to hear that you have found comparables. My thoughts are with you, and I hope the new information is helpful.

I won't ever forget how you, Jenny, helped "recruit" me to my grad program. You probably don't remember that, but your folks will.

Best wishes,

Jennifer said...

Saw Jenny's story and felt it was important to mention a diet called The Primal Diet. I have friends who turned serious health issues around using this man's findings. Here is his site:

I'll be praying for Jenny.

Dee Dee said...

I sent an email. I am praying for you, and for Alex, and for all the other girls out there who are suffering. I have a daughter that turns 13 this month. Though I am not a doctor, I am a wellness consultant, and I think I can help.

Jim said...

I remember that one of the other girls paralyzied by (apparent) Guardasil reaction was diagnosed with transverse myelitis. I just found this article, implicating IL-6 in this disorder, and/or it's progression. I have no idea whehter it would be of any help (ie whether perhaps IL-6 blocking might be of use).

Humanized anti-CD3 monoclonal antibody has been shown in trials to essentially halt Type 1 diabetic autoimmunity in it's tracks - although to my knowledge there are no trials or studies of it's use in other autoimmune conditions.

Adam I. Kaplin, Deepa M. Deshpande et al. "IL-6 induces regionally selective spinal cord injury in patients with the neuroinflammatory disorder transverse myelitis" J. Clin. Invest. 2005. 115(10): 2731-2741

Contact person is: Douglas A. Kerr, Department of Neurology, Johns Hopkins University School of Medicine, Pathology 627 C, 600 North Wolfe Street, Baltimore, Maryland 21287, USA. Phone: (410) 955-3129; Fax: (410) 502-6736; E-mail:

Bisikirska B, Colgan J, Luban J, Bluestone JA, and Herold KC. "Human T cell receptor signaling with modified anti-CD3 monoclonal antibody expands CD8+ T cells and induces regulatory CD8+CD25+ cells" J. Clin Invest 2005. 115(10): 2005; 2904-2913.

Contact person is: Kevan Herold, Yale Univeristy; Phone: (203) 737-1932; E-mail:

Laura's Blog said...

Dear All,

I am writing this because I found your story interesting. About 3 months ago my daughter Emily's left leg stopped working. It was sudden and there is no apparent reason for this to have happened. She has been to several doctors that can only tell us she has a lumbosacral plexus neuropathy. They have run many testes and can not figure out what caused her nerves to become damaged. The short story was we went over to a friends house to go kayaking. She was only in the kayak for an hour on a man made, calm lake. She was perfectly fine when you got into the kayak and her leg stopped working once she got out. Then the pain hit. Ever since then her pain has been off the charts. They can't not find any infection. She has lost 18 lbs in 2 months. She received her second dose of the HPV vaccine 2 months prior to this happening. We are going to another hospital next month to see if a new set of Doctors can give us some answers. I have not idea if what is happening to my daughter is remotely related to the vaccine or not.

peachzins said...

Is there any way that she could have contracted Lyme Disease. My daughter was bitten by a tick and contracted Lyme but the doctors would not treat her because we don't live in the Northeast of the US where Lyme is more prominent. Through my research I found that Lyme, gone undiagnosed or treated, can cause severe neurological damage. You may have already gone this route, but I thought I would tell you just in case. I have not read all of her info, I just stumbled upon your site. Blessings to you all!!