Staci and her husband Shane already had four children when they began talking about adopting another. They adopted from China once before in 2013, and thought the experience had been a blessing for their family. While scrolling through pictures of children from China who were available for adoption, Staci stumbled on the profile of an adorable, young boy named Owen. She instantly fell in love. Owen loved music, playing the drums, and cuddles. And he was living with hemophilia, a disease about which she knew almost nothing. “My heart sank,” remembers Staci. “Could our family handle a lifelong illness? How would this change our life? But … he felt like our son.”
Living with hemophilia in China
The World Federation of Hemophilia estimates that there are 400,000 people living with hemophilia globally and approximately 75% have limited access to diagnosis and therapy. People with hemophilia in developing countries face significant treatment challenges.
Staci quickly learned that, in China, access to life-saving medications for hemophilia is limited and expensive. At the orphanage, Owen did not have a regular supply of factor therapy to help prevent bleeds. Because of this, Owen was isolated from other kids. At three years old, he couldn’t play or make friends. He couldn’t climb, run, or jump for fear that he might suffer an injury or bleed that, without available factor therapy, could be life-threatening.
Global response to a mother’s cry for help
Despite having spent months learning all she could about life with hemophilia, Staci was extremely nervous as she traveled from her home in the U.S. to China to finalize Owen’s adoption.
Owen was given an infusion of factor therapy before leaving the orphanage to help protect him from bleeds during his travels. While in Guangzhou for the last week of the adoption procedures, Owen was due for another dose of factor. Even though Staci had extra medication with them, three local hospitals refused to administer it to Owen.
Staci turned to the hemophilia community for help. The response she got back was overwhelming and almost instantaneous, including multiple responses from people in China offering to give Owen an infusion. Through this incredible global network, Staci learned of an international clinic located just a few short miles from where they were staying and Owen was able to receive his treatment.
That night, Staci let Owen run down the halls of their hotel.
The first few months back in the U.S. felt like a roller coaster for the family – travelling 1.5 hours to the hemophilia treatment center (HTC) for infusions and Owen suffering from motion sickness and frequent falls while he improved his balance and gross motor strength. There were many ER visits, CAT scans, and frantic calls to the HTC for advice.
Today, life with hemophilia for Staci and her family has gotten easier and Owen is excited by the prospect of doing his own infusions in the years to come.
“Owen has shown [us] what it means to be strong and resilient,” Staci explains. “Our lives have been so blessed by Owen and by joining the hemophilia community. We have made so many connections with amazing people. It’s one of the most supportive communities you can find. I like to say that when we adopted Owen, we were adopted into the hemophilia family and we feel blessed to be a part of it.”
Learn more about our commitment to improving the lives of people with Rare Blood Disorders.