March 13, 2003 at 8:13 PM CST - Updated June 17 at 11:53 AM
Perfect Brother/Sister Match By: Wendy Ray
(Scott City, MO)--A Heartland family is determined to get the word out about a rare disease, that could have taken their little girl away from them. Like all parents, 16-month-old Kristan Blankenship's mom and dad feel she's one in a million. But when she was just seven months old, she was diagnosed with a disease that strikes just one in a million babies! Now that she's about to reach a huge milestone in recovering from it, her parents want to spread the word on how to protect other babies.
Kristan is a loving little girl. It's hard to believe that just a few months ago she was in the hospital, diagnosed with hemophagocytic lymphohistiocytosis, a rare disease that attacks your blood and your entire immune system. "It's always fatal within two months of onset," her mom LeeAnn says. But Kristan's parents caught her's, before it was too late.
When she was seven months old she had a fever that lasted a week, that treatment led to the discovery of HLH. "This is a disease that goes unseen, a lot of times it's only caught 30 percent. Thirty percent of the time it's caught pre-mortum," LeAnn says. "You are just not prepared for any kind of doctor to tell you those kind of things," her dad Dennis says.
The family temporarily relocated to St. Louis to be with Kristan at the hospital. She had four months of chemotherapy and needed a bone marrow transplant. Her four year old brother Logan was a perfect match. "Fortunately he was a 6 out of 6 match," LeAnn says. "We were very, very fortunate."
Donating the bone marrow wasn't hard for Logan, but getting it was tough for Kristan. The transplants and medicine made her swell. LeAnn says, "At this age, I think it's hard because a baby can't tell you what's wrong, where's the pain, why they're crying." But Kristan's doing much better now. She's almost at her six month mark, a milestone in getting past the disease. Her parents say it's a miracle.
Kristan's parents still have to watch her carefully, she still can't be around large groups of people because of germs. Her parents made a website for Kristan, explaining her disease and updating how she's doing.