I am contacting you because the 14-year old daughter of a close
colleague was stricken suddenly with a debilitating illness a little
over one year ago.
The cause of Jennyıs illness remains a medical mystery. Finding relevant
comparables fast could help to solve that mystery and thus provide a
crucial clue to finding the treatment that could save Jennyıs life.
Time is of the essence because Jenny is now a quadriplegic and is losing
the struggle to breathe. Therefore, Jennyıs family appeals to you to
bring any potential comparables to their notice by sending an e-mail to
jenjensfamily@[EMAIL PROTECTED]
you click through to the blog (http://jenjensfamily.blogspot.com/),
youıll see that some doctors suspect she has a rare form of ALS. There
is also a possible link to the HPV vaccine, given that 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 Jennyıs illness.
Many world-class MDs have been consulted and many treatments tried
Immunoglobulin, prednisone (oral and pulse), plasma pheresis, and
Cytoxan, have been tried based on the assumption of an autoimmune
process, with no apparent effect.
A mitochondrial cocktail has been tried based on the assumption of a
mitochondrial disorder.
Lithium and Rilutek have been tried based on the assumption of a
neurodegenerative disease.
Jenny may have had certain pre-existing autoimmune and/or genetic
vulnerabilities that rendered her susceptible to a catastrophic
reaction to the HPV vaccine. They are an autoimmune skin disease
(pityriasis lichenoides), a maternal grandmother who died of
progressive supranuclear policy, and a maternal cousin with severe
autism/seizures. Jenny also has only a single copy of the SMN-2 gene
(but otherwise does not satisfy the preconditions for SMA).
We are desperately looking for two things:
1) Other cases that might be comparable to Jennyıs. Please read the
sidebar in blue (³Am I a Comparable?²
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 Jennyıs in
their practice. Can you help get the word to doctors around the world?
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