OpenMinds Patient/Family Packages update: It is only September and we have assisted over 237 families so far. In four years more than 1.2 million dollars have been set aside and are being spent to aid families in getting accurate diagnoses, genetic counseling/prenatal diagnosis, and to cover hospitalizations and game-changing early intervention for premature babies, children on the spectrum and others with neurogenetic and neurodevelopmental disorders.
Shahd & her brother
Second Episode…-Shahd Khodr, the daughter of Ali, a Syrian refugee from Idlib. She is a 3.5 year old girl with Hurler disease we introduced to you in our previous newsletter. Hurler syndrome causes facial deformities, stunted development and intellectual disability. After securing free enzyme replacement from the Genzyme/Sanofi compassionate program, which exceeds $ 300 000/year, we took steps for a permanent solution, bone marrow transplantation from her brother. The cost for this exceeds $55,000. A generous personal donation from Mrs. Ghida Rabbat propelled four other donors to come forth. Shahd is presently at AUBMC being conditioned for a bone narrow transplant (BMT) from her brother. To be continued…..
Wednesday, September 20, 2017