CARE FOR RARE: HOPE FOR IVAN (Bone marrow transplantation for Ivan, a child with Wiskott Aldrich Syndrome)
About Wiskott Aldrich Syndrome
A rare immunodeficiency and life-threatening disease characterized by eczema, thrombocytopenia and bloody diarrhea. The immune system of a person with Wiskott Aldrich Syndrome (WAS) could fail and blood platelet and their hemoglobin count can get very low. As a result, patients with WAS will potentially need blood transfusion and immunoglobulin infusion to strengthen the immune system.
Ivan, 3 y.o., is the youngest among the three children of Gloria and Robert Alcaraz. He is their only surviving child. His two other siblings passed, succumbing to the same illness. At the time the two older children were diagnosed, it was too late—the parents have little understanding of the disease and unaware of how it can be treated.
Ivan’s family is from Midsayap, North Cotabato. His parents decided to move to Manila to seek help for Ivan’s treatment. Gloriaand Ivan are currently temporarily living in Asilo de San Vicente de Paul in Manila, an orphanage and halfway house for children and sick people from different provinces who are seeking treatment in hospitals here in Manila. Robert is based in North Cotabato, serving in the military. He visits them whenever possible.
Ivan’s case was referred to the Center for Immunity and Immunotherapy in Seattle Research Institute. According to the specialists from the Institute, Ivan needs a special kind of bone marrow transplantation (Haploidentical bone marrow transplantation or stem cell transplantation). Unfortunately, no specialist in the Philippines can performs the procedure and no local hospital can offer the complete facility and technology to handle the procedure.
Ivan is being managed by Dr. Beatriz Gepte of the Philippine Children Medical Center. He is given 6 vials of Immunoglobulin infusion to strengthen his immune system while awaiting to undergo the transplant. A doctor from Apollo Specialty Hospital in India accepted his medical case. The quoted cost of the said procedure in India is P3,000,000.
The Philippine Society for Orphan Disorders, Inc. (PSOD) is helping Ivan's family raise the amount thru different fundraising initiatives and appeal for donations by June 2018.
For inquiries, contact PSOD's Patient & Family Welfare Program Coordinator thru (02), 661-8935 or via [email protected] or visit our office at Unit 206 Greenhils Mansion, #37 Annapolis St, Greenhills, San Juan, Metro Manila.