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.
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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About the Photos
DISCLAIMER: This website has NOT authorized all links to it from other websites that reference it. Photographs appearing on this site may NOT be reposted or published without express written consent of Jenny's family.
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.
2 comments:
This amazing video has been lovingly put together for those who had the honor of knowing Jenny personally and for those who knew Jenny via this blog. It has allowed us to see Jenny in the happier days as well as the days that were harder; we see the love that surrounded her always and the hope that never ended. What a remarkable young girl and what a remarkable mother and father she had. Thanks so much to the Tetlock family for sharing this with us all.
Most Sincerely,
Nancy L. Keast
A beautiful, heartbreaking tribute.
warmest regards and sympathy,
Julie Irwin
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