Julianna Minerva Fights SJIA/ MAS

My niece Julianna Minerva celebrated her 3rd Birthday in the hospital this Wednesday, 6/26 fighting for her life.  Julianna was diagnosed with Systemic Juvenile Idiopathic  Arthritis,  a rare disease at 13 months old. Last week she was rushed to Cohen's Children's Medical Center with a rare complication called Macrophage Activation Syndrome which is a life-threatening complication. Julianna was receiving treatment for several days with no improvement and her vitals were declining.  Knowing that Cincinnati Children's Hospital is the best pediatric Rheumatology Hospital in the country her parents sought assistance through the SJIA  Foundation Network. They were put directly in touch with a physician who told them about a clinical trial that has saved several children's lives and they felt Julianna was a candidate. On Thursday evening her inflammation markers rose to over 64,000 and normal is under 140, her breathing became labored and she was rushed to the PICU unit.  At that time my sister and brother-in-law decided to go forward with the trial and Juliana was airlifted by jet to Cincinnati the very next day at 3 a.m. She has met several of the top rheumatologists in the world who coincidentally are here this weekend for a conference uniting all SJIA families. Julianna will be the eighth person the world  and the 1st first in the United States to receive this drug. The drug is FDA-approved to treat people with primary HLH a very serious life-threatening killer disease. MAS or Macrophage Activation Syndrome is " the little sister" of HLH and scientists felt that it might be a good option for children who are failing traditional treatments for MAS.
Julianas silver lining this week with such heart breaking news is that she was diagnosed with MAS when this trial is available. Previously children have had to fight for their life and many have lost their battle. 
We are very hopeful and optimistic that this trial will help my niece and bring those inflammation markers down.  I am asking at this time for friends and family to help support Julianna and her parents through this difficult time. 
This trial treatment could potentially last a month or longer and as all of you know hotel rooms and basic daily expenses start to add up.
Please donate to help lift some of the financial burdens for my sister and brother-in-law during their stay in Cincinnati. Please pray for my niece and her parents at this time. They need as many prayers, love and support as they can get. Thank you.