Keeping Kyler alive – CheckOrphan

PEA RIDGE – Kyler Kasper is living on borrowed blood.

He has not yet celebrated his second birthday, but Kyler’s parents expect him to reach it, thanks to blood donations from strangers.

Kyler was recently diagnosed with Diamond Blackfan anemia, a rare blood disorder that affects about 500 people in America. According to the Diamond Blackfan Anemia Foundation Web site, the condition is characterized by a failure of the bone marrow to produce red blood cells, which causes Diamond Blackfan anemia patients to become severely anemic.

Kyler has been receiving a blood transfusion every four to six weeks since he was 16 months old.

Kyler was the 10th case of Diamond Blackfan anemia diagnosed at Arkansas Children’s Hospital in Little Rock. There are more than 550 patients registered with the Diamond Blackfan anemia registry. Approximately 25 to 35 new cases are reported each year in the United States and Canada.

“I thought he had the flu,” his mother, Sarah, recalled, “and took him to the pediatrician, where they did a CBC (complete blood count). His numbers were 2 and 6; normal is 14 and 22. He was very lucky to even be alive.”

Sarah remembers, tearfully, that they were rushed to Arkansas Children’s Hospital by ambulance. Kyler was in the intensive-care unit for a week. When they entered the emergency room at Children’s Hospital, medical personnel prepared to draw blood, turned all the lights out and illuminated his hand with a light from behind his palm in order to better see the veins. Kyler stopped breathing, and his heart stopped.

“They thought he was bleeding internally, but there was no blood coming out,” she said. He had several blood transfusions over that week, as well as a bonemarrow biopsy because they were looking for cancer.

Kyler was born with Diamond Blackfan anemia. Sarah explained that children are usually diagnosed either at birth or somewhere between 16 and 18 months of age.

The condition doesn’t have a high survival rate, Sarah said, explaining that children usually die of iron overload from other people’s blood because the sufferer’s bodies can’t process it.

“They usually don’t make it to the second decade of life,” Sarah said.

Some Diamond Blackfan anemia patients opt for a bone-marrow transplant, but that in itself is dangerous because the body’s immune system must be completely destroyed before the transplant surgery. It’s a lengthy process that is sometimes fatal.

“They have to have a perfect – not almost perfect – match,” she said. “I know of more deaths than survivors.”

For now, Kyler appears to be a completely normal toddler. He plays with his toy drum and runs to hide behind his mother when he realizes he is being watched.

But, about every four weeks, he becomes cranky and tired, his face becomes pale, his lips become white, and dark circles appear under his eyes. Then, the Kaspers head to Little Rock for another blood transfusion. They leave about 3 a.m. and travel the road south.

“Without the blood transfusions, he would not be able to survive,” Sarah said, adding that family members cannot be the blood donors because their blood must be foreign to his system in case one of them is a match for a future bone-marrow transplant.

“We want to raise awareness for donating blood. It truly does save lives,” Sarah said. “If it weren’t for the blood, Kyler wouldn’t be alive.”

Remembering the day he was diagnosed, Sarah said: “I knew something wasn’t right. I felt like a bad mommy. … It was a nightmare.”

“At first they thought it was some sort of virus killing his red blood cells faster than he could produce them,” she said.

About three weeks ago, Kyler had a second bonemarrow biopsy, and the Diamond Blackfan anemia was diagnosed.

Information overload is how Sarah describes the past several months. She said she felt bad about crying over her son while at Children’s Hospital because there are so many sad cases there.

“We are not the worst off. I consider myself lucky,” she said. “I have a child who will live.”

Every Monday, Kyler has blood drawn by his local pediatrician, who is in regular contact with physicians at Children’s Hospital and at St. Jude Children’s Research Hospital in Memphis.

Sarah has also been in contact with Lindsay Goodwin, 26, of Rogers, who is living with Diamond Blackfan anemia, and with Billy and Vicky Henson of Pea Ridge, whose son, Matthew, died Jan. 27, 2006, at the age of 21.

“As a mother, I’m going to fight for research, for a cure,” Sarah said.

She and her best friend, Jessica Clark, have organized a softball tournament for a fundraiser.

“We hope to pay off the medical bills and send the rest to further research both at Arkansas Children’s Hospital and St. Jude’s,” Sarah said.

Todd and Sarah Kasper, with their two sons Hagen Schader, 7, and Kyler, moved to Pea Ridge four years ago. Todd works for the Wal-Mart sign shop as a painter. Sarah works in human resources as a project manager for the Wal-Mart Corporate People Division.