Allies for Andrea Rose

In mid December 2017, our daughter, Andrea Rose was admitted to Huntsville Hospital ICU with pancreatitus, splenomegaly, anemia, and most devastatingly, kidney failure. She has since been diagnosed with aHUS(Atypical hemolytic uremic syndrome).It's caused by the complement (part of the immune system) attacking her blood cells, causing them to pop. The fragments of the popped cells clot up the kidneys, and can clot up other organs like the brain. Even though there is clotting, the blood is also thinned, making breathing harder and harder, so there's no easy fix.( See links below for more in depth information). At this time, there is only one treatment for aHUS. She has been receiving a weekly IV infusion of Soliris. This medicine was only FDA approved a few years ago and the treatment costs are $30,000 per infusion. This is an extremely rare disease and in Andrea's case her medical team has told us without the Soliris infusions, she will die. This is the ONLY long term treatment available. Andrea has a long road ahead of her.

On a positive note, patients receiving Soliris have been able to recover even after being on dialysis. Andrea was immediately started on dialysis in ICU as well as receiving blood transfusions and platelets. For anyone who does not know our daughter, she has always been a vibrant, very active person who loves life and tries to live it to the fullest. She enjoys kayaking, mountain biking, triathalons, water sports, just absolutely anything outdoors! She was an active volunteer and is one of the most compassionate people you could ever meet who would do anything fr anybody! She loves her family and most of all God her two boys Noah and Isaiah!

We are kindly asking for donations to go toward the necessary Soliris infusions, multiple prescriptions, travel expenses, and other medical costs. Andrea has been unable to work and will remain so for a while. Our family asks to please donate if you can. Any amount will be appreciated. If you are unable we ask that you please share this link and pass the word to your family, friends,co-workers, and any others you think might be willing to help. We will keep you updated on her condition on the update page. Thank you very much. Rick and Peggy

For more information on aHUS please follow these links:

https://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome

http://rarediseases.org/rare-diseases/atypical-hemolytic-uremic-syndrome/

http://www.ahussource.com/

Donations

  • Anonymous 
    • $5 
    • 24 mos
  • Crystal White 
    • $25 
    • 27 mos
  • Anna & Jose` Perez 
    • $35 
    • 27 mos
  • Rhonda Parker 
    • $100 
    • 27 mos
  • John Harwell 
    • $100 
    • 27 mos
See all

Organizer

Peggy Smith 
Organizer
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