This is my sister, Jill. During the spring of 2011, she 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.
My family will be walking a 5k this summer to help raise awareness about the disease so that fewer people will suffer the same fate as my sister. Our team is also raising money to support HLH research and patients. Below are some links to donate and get more information. If you cannot donate, please spread the word. This is very important to me and everyone that knew Jill.
I am sorry for your loss dear. I know how it feels losing a person close to you.
My mother was overweight not sick like your sister. The fat had clogged her lungs and we lost her April 1 2012. But at the funeral the priest told me this and I would want you to keep this in mind.
“Your mother is in your heart and in your very soul. Have stuff that she had so a piece of her will always ne with you.”
So yeah I am sorry for your loss.
Thank you so much <3.
That is a very sweet thing to say 🙂
You are welcome 🙂 my ask box is always open
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