Amber Kosmas is a student at Salt Lake Community College and mother of two. Her son Dimitri is a typical 14-year old who loves video games and playing basketball with his friends. Angelina, Kosmas’ 9-year-old daughter, is a little “artsy-scientist” with a curious eye and a love for painting.
Registration for the walk is $20, and individuals who register before March 31 will receive a free t-shirt. Kosmas has also set up a donation website at First Giving, where individuals may make donations to the foundation.
To register for the walk click here (you can create your own team or join Kosmas’ “Thal Utah”).
Donations for the Cooley’s Anemia Foundation can be made here.
For more information about Thalassemia visit their website.
Appearing to any casual observer to be a couple of average kids, Kosmas’ children have a rare, and in some cases fatal, disease.
They suffer from a form of thalassemia called “beta-thalassemia,” more commonly known as Cooley’s anemia.
“It doesn’t matter how many times I see it or go through it, or how used to it we are, watching you’re kids get poked and sit there for four hours and having to do this – it’s like the first time every time,” said Kosmas.
Thalassemia is a genetic blood disorder that causes mild to severe anemia due to a lower number of red blood cells or an insufficient amount of hemoglobin in the red blood cells.
Kosmas discovered that her son Dimitri had thalassemia nearly seven years after initially checking her son into a hospital for a high fever when he was four years old
“That’s when all the research started,” said Kosmas. “We started doing DNA tests; they still couldn’t figure out what it was.”
After complaints of what Kosmas then believed was just an upset stomach, and what doctors later discovered was an enlarged spleen, Angelina was diagnosed with the same disease and began treatment in January of 2011.
With two children suffering from thalassemia, Kosmas has become an advocate for those who experience the disease, gathering research information about thalassemia for nearly eleven years now.
Symptoms of thalassemia include slowed growth, bone problems and in many cases, enlargement of the spleen. Diabetes, osteoporosis as well as heart and liver failure may result from undertreated cases.
According to the Center for Disease Control (CDC), an estimated 1,000 people in the U.S. suffer from Cooley’s anemia
The main form of treatment for thalassemia patients is regular transfusion of red blood cells. In Kosmas’ case, transfusions for Dimitri and Angelina are every four weeks, though there are families known to go through it as often as every two weeks.
The process of transfusion is very meticulous. With required lab work, cross matching and check-ups for each session, the process can last up to several days. Receiving transfusions will be a lifelong routine for the two children.
Iron chelation therapy is also needed, due to iron overload caused by continuous blood transfusions. Too much iron in the blood can cause organs in the body to shut down. As treatment, Kosmas children must take medication for chelation therapy, removing excess iron from their bodies.
Struggling with being unable find people who could understand what she was going through, Kosmas found comfort in the Cooley’s Anemia Foundation (CAF) of New York
“I felt alone not being able to say what I’m going through, having no one to talk to,” said Kosmas. “I mean your friends can listen but they don’t really know what you’re going through.”
Last year, CAF traveled to the five major hospitals for thalassemia, to meet with individuals struggling with the disease. Though no hospital specializing in thalassemia was located in Utah, the CAF made a special trip out to Utah to meet with Kosmas and other families who experience thalassemia.
“That’s how I got to know more people with thalassemia,” said Kosmas. “I thought it was really nice of them to do that.”
To express her gratitude towards the CAF, Kosmas has participated in organizing the “Care Walk,” a walk-a-thon here in Utah, which will donate all proceeds to the CAF and fund research for the cure to thalassemia as well as the relief of health issues that arise with the disease, such as heart failure, diabetes and osteoporosis.
“I have some individuals who are coming from Primary Children’s Hospital, and we’re all going to walk together,” said Kosmas. “We’re getting the word out, anyone can do it.”