We urgently asked for your help raising funds for our brilliant and beautiful daughter, Jade, who has spent years battling the rare degenerative neurologic disease Myasthenia Gravis (MG) that has threatened her life. Jade has the most severe form of the illness (refractory) and her case is complicated by Lupus and Rheumatoid Arthritis.
PLEASE VISIT HER WEBSITE/BLOG TO READ HER COMPLETE STORY, AN EXCELLENT Q & A SECTION, AND SEE PHOTOS. http://www.absconditabellum.wordpress.com
At this site, you'll find an excellent Q & A page, explanations of the autoimmune diseases she is currently dealing with, and her personal reflections about living with life-threatening chronic illnesses.
Friends, please understand that no donation is too small, seriously, and we are sincerely grateful for every single dollar donated.
On bad days with MG, Jade cannot see, read, speak, swallow, breathe on her own, or move a muscle. Due to RA and Lupus, she also lives with excruciating nerve and muscle pain and, unfortunately, painkillers have no effect upon her condition. She is homebound and reliant on a home nurse and a motorized wheelchair, and is often unable to communicate.
We never imagined we would ever be in this position–asking for donations to save Jade's life–yet we are determined to do so. Time is of the essence, as Jade continues to decline, in spite of the medications (taken every 3 hours 24/7) that keep her alive.
There is only one therapy left that may save Jade's life–HSCT (Hematopoietic Stem Cell Transplantation). This treatment removes stem cells from her bone marrow before her immune system is wiped out with chemotherapy. After chemo, her own stem cells will be reintroduced to her body–thus resetting her malfunctioning immune system with a healthy one. The treatment requires a lengthy hospitalization at a medical research center that has full quarantine facilities. Jade is ready and willing (and strong and brave) to undergo HSCT.
We wish to see her thrive again and reach her potential. She dreams of doing the things that once gave her pleasure, from reading and painting to playing violin and hiking. Despite illness, she works toward her goals of a career in science, refining her inventions and studying the cosmos. Were she not limited by debilitating condition, there is no telling what she could accomplish.
When we first launched this campaign last December, Jade was waiting for acceptance into various HSCT programs around the world, including two FDA clinical trials in the United States (one of which totaled $500 thousand dollars). Since then, the Russian program under the direction of Dr. Federenko accepted her for treatment, and that's where she is now.
We believe that with your generous gifts, along with love, faith, and prayer, we can save her precious life.
In deepest gratitude to all,
Juliana & Evo
Jade's Parents
and Jade's Fundraising Team