Have you ever wondered about the extra challenges faced by the families of chronically ill children? Three-year-old Lauryn was diagnosed with beta thallassemia, a genetic blood disorder that disrupts the production of hemoglobin and often leads to severe anemia. We asked Lauryn’s mom, Christine, a few questions about how blood donors make a difference to her family.
UBS: Lauryn has beta thalassemia. How do you describe her condition to others?
Christine: Thalassemia is a rare genetic blood disorder that mainly affects people of Mediterranean and Asian descent. There is no cure at the present time. People with Beta Thalassemia do not have the hemoglobin gene. Thalassemics’ blood cannot supply oxygen throughout their bodies to vital organs or tissues. Both parents must carry the thalassemia trait in order to pass it to the child. The odds are 1:4 each pregnancy. My three-year-old daughter, Lauryn, is “surviving” solely on the blood that people donate.
UBS: How does this disease impact your lives every day?
Christine: Our lives are mostly spent at Phoenix Children’s Hospital. Lauryn gets blood transfusions every 3-4 weeks. She receives 250 cc’s each time. When Lauryn gets ill, even a slight fever, we have to rush her to the doctor to determine if she needs “extra blood” or additional treatment. Common childhood illnesses are more severe for thalassemics. Their immune systems are very compromised, so we need to be cautious. Lauryn is on an extremely expensive medication called Exjade. When people get blood transfusions, the iron from the donors blood accumulates in the body and is mainly deposited in the heart and liver. It’s called iron-overload. Besides not being transfused, iron-overload is the number one killer of people like Lauryn.
The medication, Exjade, is used to remove the iron deposits (also known as ferritin) from the body. It’s not 100% effective, but it definitely does its job! When you look at my baby, you would never expect that she had anything “wrong” with her. She is a happy, energetic, normal three-year-old. Even though she is only three, she’s taught my family so much – faith, courage and definitely hope!
UBS: Why are blood donors important to your family?
Christine: To put it into words….wow. Well, blood donors are the reason why my child is healthy and alive today. Fifty years ago, blood donors were scarce, and thalassemics only lived through their teens. Today, because of awareness and more information, thalassemics can live well into their forties!!! The fact is that blood donors are selfless, compassionate and willing to help others. They have no idea the impact they make every time they donate blood. I pray every night, before bed, thanking God for donors. l know in my heart that Lauryn will live a fulfilling, healthy, and successful life because of the gift that everyday angels give.
My life and family are complete because of blood donors. There is nothing in this world that I could ever do to thank them enough! They don’t realize it, but I hope they will, that they save people like my baby every day, and every time they donate, they truly do give “the gift of life!!”