Rally for Livi
Donation protected
As many of you know, Livi was diagnosed with Complex Regional Pain Syndrome (CRPS) in 2019 at the age of 8 after experiencing extreme pain in her leg.
CRPS is a chronic neuroinflammatory disease, characterized by intense, prolonged pain generally affecting a limb. The level of pain is measured as one of the most severe on the McGill University Pain Scale ranking above giving birth unprepared or having a finger amputated without anesthesia.
CRPS is often known as "the suicide disease" as this is the leading cause of death in those diagnosed with the condition.
Although this diagnosis is rare with no cure or universally effective treatments, it can go into remission for amounts of time. Livi was in remission until February of this year when she developed a large mass in the affected leg. Surgery was quickly scheduled as there was a possibility that the mass was cancer. God answered our prayers with a negative biopsy; however, the surgery triggered the CRPS on a monumental scale. The smallest touch to Livi's leg is incredibly painful which prohibits her from wearing anything clothing on that leg and covering up with her blankets at night.
Although we don't have any CPRS specialists close, Livi does have a pain management team of specialists at Children's Hospital in Milwaukee which she sees twice a week. Livi is also in therapy in hopes of walking on that leg correctly again. With Livi being an avid dancer and softball player, you can bet she was devastated when both were taken away so abruptly. Our hopes are that with therapy and the expertise of her pain management team that she will be able to return to a normal life. As you can guess, this is a huge hit to her parents financially. Taking time off work, traveling back and forth to Milwaukee multiple times per week, mounting medical bills, and out-of-pocket therapy sessions are taking a great toll.
They say "it takes a village..." and I'm asking our village to rally around Liv and her family and reduce some of their financial stress. Every little bit helps.
Organizer
Jen Steinacker
Organizer
Kaukauna, WI