By Roz Kohls
DASSEL, MN Most people assume the need for blood donors results from traffic accidents and other emergencies. Blake Terpstra, 2, of Dassel, on the other hand, needs blood donations from 1,000 people every four weeks just to stay alive.
Blake has primary immunodeficiency disease, PIDD, a hereditary condition, said his mother, Sarah Terpstra. This means part or all of his immune system is compromised, making it difficult for his body to fight infection. Even if Blake gets a common childhood disease, such as chicken pox, he will be hospitalized immediately, said Sarah, a part-time social worker at Cokato Elementary School.
Because he is unable to fight off infections, even mild ones, Blake rarely leaves the Terpstra home at 152 Edminster Cir., Dassel, she said.
Approximately 250,000 people in the United States have PIDD. There are 150 types, and Blake has three of them, said Sarah.
Every four weeks Blake goes to Children’s Hospital of Minneapolis for an infusion of seven grams of immunoglobulin, produced from 1,000 pints of donated blood. The infusion is done intravenously and takes about five hours, she said.
How did this happen to Blake? No one knows. Sarah and Chad Terpstra are originally from Wisconsin. PIDD is hereditary, yet neither of them knows anyone in the family who has PIDD, Sarah said.
Blake’s sister, Chloe, 5, has asthma, but so far, she doesn’t show any symptoms of PIDD.
Chad, who is a layout tech for W.E. Pour Walls of Buffalo, and Sarah chose to live in Dassel in 2000 because it is halfway between Willmar, where Sarah worked at the time, and Minneapolis, where Chad worked then.
Within two weeks of Blake’s birth, he became ill with a type of cold, RSV, that infects infants. It sometimes becomes fatal.
“He’s been sick all his life,” Sarah said.
Sarah has lists of medicine Blake was prescribed that fill several pages. He has had tubes put into his body, and had surgery in June.
“Coughing is his signature. Everybody has heard him cough,” Sarah said.
Sometimes Blake coughed so violently, he vomited, his eyes rolled back in his head, and he passed out.
The family doctor prescribed Amoxicillin, a common antibiotic, to try to get Blake’s constant infections under control. It was no more effective than water, Sarah said.
The Terpstras were mystified why their son was sick all the time, and were beginning to worry that maybe Blake had leukemia.
Also, when they took Blake out in public, often people were rude to the Terpstras because of his constant coughing. Sarah recalled an incident at a zoo at Easter in which a man made a snide remark to the Terpstras about them bringing a sick child to where the lions and tigers were, because of the possibility of him contracting an infectious disease.
“We didn’t know what was wrong,” Sarah said about their frustration.
Finally, in May, Dr. Francis Hobson of Hutchinson suggested genetic testing. That is how the PIDD was discovered.
People need to ask their doctor about genetic testing if they have the following symptoms:
• a severe infection that requires hospitalization or intravenous antibiotics.
• a persistent infection that won’t completely clear up or clears slowly.
• an unusual infection caused by an uncommon organism.
• a recurrent infection that keeps coming back.
• others in the family having a similar susceptibility to infection.
The regular infusion of immunoglobulin has helped Blake tremendously, especially the first few days after the procedure. He has lots of energy, and looks and acts healthy.
About 70 percent of those diagnosed with PIDD are being treated with immunoglobulin. In the future, Blake might do his own infusions from home. Sarah wonders, though, how Blake will do when he is school-age. She is worried he will miss a lot of school, she said.
Also, the medicine, treatments, and surgery have all been financially crushing for the Terpstra family.
People often ask the Terpstras how they can help. Sarah and Chad respond, “Donate blood.”
For more information, contact the Immune Deficiency Foundation at (800) 296-4433, or visit www.primaryimmune.org.