Treatment for HLH life-threatening

I’m writing for any type of help with my niece Skylar Bell. Skylar is 1 years of age living in St. Louis MO. My sister Tamille Bell relocated to St. Louis to finish her degree in Court reporting. A week after her graduation she came home from school to find her 1 year old daughter unresponsive and her skin color was grey. Skyler was rushed to Cardinal Glennon Children’s hospital and she was diagnosed with HLH . HLH is a life-threatening condition. It is often caused by an inherited problem of the immune system, which is called “primary” HLH or “familial” HLH. In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don't work properly to destroy infected or damaged cells as they should.








We're trying to get baby Sky to Cincinnati for treatment . We're having issues with medicare and her blood platelets are low. This can cause bleeding in the brain . The Hospital she’s currently in can’t help her because they don’t specialize in HLH so, every day she’s watching her baby girl suffer. >>>WE NEED HELP<<<< anyone please we don’t want to lose her. Also she may need a bone marrow transplant she has already received a blood transfusion. Thanks for your support.

This disease so rare that even some doctors haven’t heard of it. It primarily affects children — about one in 1.2 million. HLH originates in the bone marrow, the spongy tissue inside some bones that contains stem cells. The disease causes these cells to malfunction and destroy the body’s own red blood cells, white blood cells and platelets. It can cause permanent damage to the spleen, liver and central nervous system. 
Graduation day was the best day of her life not knowing just days later the disease would attack her daughter body.