My family is putting together a team to walk in the annual 5K sponsored by Liam’s Lighthouse. This will be our second year participating in this event. Our goal is not only to raise money for HLH research, but also awareness. We are looking for support in any way that someone can contribute, whether it be sharing the cause, donating money, or volunteering to join the team. Our monetary goal is $5,000 and our team name is “Team Blais’d.” This is only the beginning of what is going to be another battle against HLH.
For more information and donating, please see the links below
Team Blais'd on facebook: www.facebook.com/pages/Team-Bl…
Donate here: www.firstgiving.com/fundraiser…
Tumblr post to reblog: motherofdragonfruit.tumblr.com…
Full story (Long post with hospital and death mentions ahead):
During the spring of 2011, my sister Jill ( elizabethbluecatfish ) started experiencing strange symptoms, namely a strange “rotten mucus” scent that only she could smell. After many trips to the doctor, it was discovered that it was caused by these silent seizures that were causing a breakdown a myelin in her brain. She had been healthy her whole life, but that seemed to be changing.
Despite that, she was able to graduate from high school, start preparing for college, and even make things for an anime convention later that summer.
But she never got to go to college or the convention. As her health started to decline, she was sent from doctors in Orlando, to doctors in Boston, and finally doctors in Cincinnati. After conferring with each other, they diagnosed her with Hemophagocytic Lymphohistiocytosis, otherwise known as HLH; a rare disease. What made her case more interesting was the fact that while HLH is normally a blood disorder, it attacked her nervous system. In September 2011, she went to Cincinnati to receive a bone marrow transplant. Strangely enough, our sister Becca was diagnosed with the same disease at about the same time, although she had a more typical case with it attacking her blood.
Both my sister had their transplants that winter, which included chemo and drugs to suppress their immune systems. Becca’s transplant went smoothly and she quickly recovered and grew stronger. Jill however, continued to have a lot of health problems, which kept piling up upon each other. She lost her battle with HLH on July 18, 2011.
Losing Jill has been easily the worst thing in my life and I am not alone in my experience. Many HLH patients die because many doctors do not know about it, so they are often misdiagnosed or undiagnosed until it is too late.