SEATTLE — According to the Centers for Disease Control and Prevention (CDC), approximately 70 percent of people in the United States with the chronic disease hemophilia receive care at federally funded hemophilia treatment centers (HTCs). In most developing countries, little to no government assistance exists for sufferers of hemophilia and other blood disorders.
People with hemophilia, a genetic disorder, are born with dysfunctional or deficient clotting factors in their blood. Though several types of hemophilia exist, the two most common are hemophilia A, where the body lacks sufficient amounts of clotting factor VIII and the rarer hemophilia B, where the body lacks sufficient amounts of clotting factor IX.
Hemophilia is carried on the X chromosome and is most common in males. The disease is rare in women, though carriers can exhibit issues like heavy bleeding during menstruation and childbirth. Besides excessive bleeding when the skin is cut, the disease can cause internal bleeding into joints, leaving them swollen, painful and arthritic. Untreated, the disease leads to severe disabilities or death.
By injecting a concentrate of commercially produced factor, which restores the mutated gene and allows the blood to clot, people with hemophilia can live normal and active lives. Globally, however, only 70 percent of people with hemophilia receive adequate treatment.
Laureen Kelley and Save One Life
After becoming a mother to a son with hemophilia, researching the disease and learning that blood disorder care and information about hemophilia in developing countries may be inadequate, Laureen Kelley began traveling worldwide to help educate hemophilia patients and families. Kelley, president of LA Kelley Communications, Inc., realized that most patients lacked not only access to proper medicine, but also to necessities like food, vitamins, school tuition and transportation to and from clinics.
Her company began donating money, and donations quickly amounted to millions of dollars. Recognizing the need for support, Kelley founded Save One Life in 2000 under one theory: once hemophilia families in wealthier countries were aware of the lack of access to proper care for families with hemophilia in developing countries, they would want to help.
Help, they did. Under Save One Life’s concept of direct sponsorship (sponsor funds are not pooled; rather, beneficiaries receive funds directly from their sponsor), over 400 sponsors in the U.S., Australia, England, Canada, Italy, Sweden and Qatar now share their resources with more than 1,050 families in 13 countries: Bangladesh, Cambodia, the Dominican Republic, Ghana, Honduras, India, Kenya, Nepal, Nigeria, Pakistan, the Philippines, Romania and Uganda.
15 Years of Save One Life
In 2016, a gala celebrating the 15th anniversary of Save One Life recognized distinguished benefactors and beneficiaries of the hemophilia community. Notable honorees included:
- Former Major League Baseball shortstop Tony Fernandez, for his yearly participation at a camp for children with hemophilia in the Dominican Republic.
- Eric Hill of Diplomat Specialty Infusion, who sponsored 31 children with hemophilia, organized two fundraising climbs up Mount Kilimanjaro and was the first contributor to the Save One Life Endowment Fund.
- Usha Parthasarathy, a mother of two children with hemophilia, a volunteer coordinator since 2005 and an integral player in the establishment of chapters of the Hemophilia Foundation in India.
- Barry Haarde, a cyclist with hemophilia and HIV who completed five Wheels for the World cross-country fundraising tours for Save One Life.
- Mihai Stefanescu of Romania, a teenage pianist, international competition winner and beneficiary of Save One Life.
Through the sponsorship of hemophilia communities in wealthier nations, Kelley’s vision of compassionate and dignified support to people with hemophilia in developing countries has reached families all over the globe. Provisions of blood factors bolster the potential of individuals by, just as the organization’s motto says, “Caring for people with hemophilia around the world – one at a time.”
– Jaymie Greenway