3 Moms and a Cause: Johnston boys battle blood disease; moms unite to fight it, too

March 31, 2009

Johnston, Iowa - Three Johnston moms whose sons are afflicted with the same rare disease are working to raise money to help researchers work toward curing the illness.

Heidi Barrett's son, Grayson, 9; Karen Aljets' son, Eric, 11; and Heather Brunk's son, Tate, 3; all have been diagnosed with Idiopathic Thrombocytopenic Purpura, a condition in which the blood doesn't clot as it should. Through recent coin drives and other efforts, the mothers have raised more than $3,000 to be donated to the ITP Foundation for research efforts. Barrett said she hopes that amount represents just the beginning.

According to the National Heart, Lung and Blood Institute, the condition is caused by a lower-than-normal number of platelets in the blood. People with the disease often have purple bruising on the skin or mucous membranes; the bruises mean that bleeding has occurred in small blood vessels under the skin.

There are two types of the disease: acute and chronic. According to the site, acute, the most common type, generally lasts less than six months and occurs primarily in children. It commonly occurs after a child has contracted a virus. The chronic version is long-lasting and primarily affects adults. Neither form is contagious.

Barrett's son recently suffered a rare recurrence of the acute type of the disease. She said although the disease is usually not life-threatening, it is life-altering.

When platelet counts are low, people with ITP are advised to curtail their activity to reduce the risk of injury and bleeding. Staying quiet is often a tall order for a young boy, Barrett said

"When a platelet count is below 50,000 - normal counts are between 150,000 and 450,000 - there is to be no diving in a pool, no roller coasters, no skateboarding, biking, dirt bikes, contact sports, or roughhousing," she said. "From a young boy's perspective, it's 'I can't do anything!'

"When platelet counts fall below 20,000 is when we see most dramatic signs of bleeding, and treatments are implemented; and when counts fall below 10,000 the individual is at significant risk for bleeding and is kept very, very quiet."

Barrett said it's surprising that three Johnston families have been impacted by the disease, which affects approximately 70 out of 1 million children each year in the United States.

"It's quite remarkable that three families within a small community all came together at the same time," Barrett said. "In most cases, the cause of ITP is unknown; actually, there are still too many unknowns with ITP, (which led to) our fundraising efforts. There needs to be more research done."

Heather Brunk said when her son Tate first was diagnosed with the disease, she had no idea what to think.

"We had a mix of emotions; when your 3-year-old has dozens of bruises and daily bloody noses, you just know something is not right," Brunk said. "At first, I wrote it off as an active 3-year-old bruising and the fact that the air was dry, (but) I stuck to my mother's intuition and kept questioning the doctors."

Tate has been showing signs of improvement in recent weeks. His mother said his turn for the better has given her time to think about how critical it is to raise local awareness of the disease. Brunk and Barrett said they are especially concerned for Eric Aljets, who remains in the throes of an acute episode of the disease.

"All three of our families have kids involved in sports and schools, so we talk to other parents. I've been keeping my friends and family updated on Facebook, and we keep educating ourselves," Brunk said. "The Johnston community should know that there are three little guys out there who need our prayers, and we thank those who have already prayed and donated to help their cause."