Levi Osterfeld is your typical six-year-old—A huge fan of Legos and Paw Patrol, Levi loves trucks, drawing, and horsing around with his older sisters and his brother Kai. “He's such a fun and loving kid,” according to his mother, Mara Osterfeld. “He is super laid back and super brave…he loves to laugh and be silly with his friends and family.”
But unlike most six-year-olds, Levi relies on blood donors to live a normal, happy life. Every three to four weeks, Levi receives lifesaving blood transfusions to manage his diagnosis of beta thalassemia major—and without donors, his life would be vastly different.
Mara and her husband adopted Levi from China when he was about four and a half years old; he was diagnosed with beta thalassemia major at 10 months. Beta thalassemia is an inherited blood disorder characterized by reduced levels of functional hemoglobin, which is the red, iron-rich, oxygen-carrying pigment of the blood. A main function of red blood cells is to deliver oxygen throughout the body; in beta thalassemia, severe anemia develops and causes fatigue, weakness, shortness of breath, dizziness, headaches, and jaundice. Left untreated, the condition can cause enlarged spleen and liver, brittle bones, recurrent fevers, and a dramatically reduced lifespan.
Prior to his adoption, Mara says, Levi was not able to get the treatment he needed to live with beta thalassemia—"Healthcare in China is different from here and if you are unable to pay up front for any needed medical care, you cannot be treated,” she explains. “Also, blood products are typically in a severe shortage in China.”
"When he was in China waiting to be adopted, he only received transfusions about 1/3 as often as he does now,” Mara continues. “After 4 years of that, his body was not in good shape. His spleen was swollen and he was near liver failure. He was pale and weak and couldn't walk up a staircase without pulling his body weight with the railing. His facial bone structure was beginning to change due to his bone marrow being overactive, trying to make red blood cells--which he is unable to do with beta thalaseemia major.”
Beta thalassemia is a serious diagnosis, especially in a place with limited healthcare like China—but once they learned about Levi, Mara and her husband were committed to bringing him home to Ohio and giving him the life he deserved. “My husband and I had learned about beta thalassemia major when we were in the process of our first adoption and completing a checklist of needs that we were willing to consider,” she explains. “When we were beginning our second adoption, my friend texted us an advocacy post about a 3.5 year old boy in China with beta thalassemia major and it before too long, it was obvious that that little boy was to be our second son. We started the process for him and brought him home about a year later.”
Levi has brought a lot of love and light into their family, and now that he living in Cincinnati with a host of top-tier healthcare options close to home, Levi has rebounded and is able to live the active, happy life that every first grader deserves to have.
“Levi receives excellent care and is transfused regularly every 3-4 weeks before he has a chance to feel the symptoms of his hemoglobin getting low,” Mara says. “With these transfusions, he is able to avoid feeling hand, foot and back pain and headaches. He is able to keep his energy level up so that he can run and play and do everything a 6-year-old wants to be able to do. After beginning to receive regular transfusions and regular medication needed to help purge the iron overload from his body, he became much healthier quickly and began feeling much better, as well.”
While Levi is just happy to play with his friends and siblings and go to school, Mara knows that his life today is only possible because of blood donors. For that, she is truly grateful.
“We are so thankful for the people who take time out of their schedule to donate blood!” she says. “The words ‘thank you’ don't really seem adequate when your child needs something that they can't live without, and is dependent on strangers to provide that for him. It feels amazing that our son can have what would otherwise be a terminal illness and that all we really need to do to help him live a normal, healthy life is give him a medication each day and take him in for a bag or two of blood every month.”
“Without these simple things, he would not only be very sick every day, he wouldn't have more than a handful of years left to live,” Mara adds. “It can be a little hard to see him have to have blood draws every few weeks and have frequent long hospital appointments, but honestly, he lives a really normal life and I'm just so happy that medical care can provide him all he needs to be happy and healthy.”
Though it’s hard to put her gratitude into words, Mara is deeply appreciative for every donor who makes the time to roll up a sleeve.
“Thank you for taking the time out of your day when you could be doing something else. Thank you for making blood donation a priority, a routine. Thank you for thinking of others--for people you don't even know,” she says. “My little boy has a life completely unlike the one he would be having if he didn't receive blood and it is only because of blood donors.”