Hello my name is M'Elena, I have a son named Dareryq(pronounced Der-rick)he has Sickle Cell Anemia(SS1 type) he was diagnosed at three weeks old. Ever since his first crises at five months old, he has been hospitalized 20 times, many blood transfusions, his disease has limited not only his lifestyle, but my mother's and mine. At the age of four, he developed Acute Chest Syndrome(ACS),due to the neglect of his specialist's. After being put into pediatric ICU, in order to save his life he was put into a drug-induced coma, intubated, and put on a ventilator( to breath for him), an exchange-blood transfusion,Methadone, Fetanyl, and other medications. Dareryq is now 8 yrs old and doing a lot better. For the last 8 years, my life has come to a halt,my longest lasting job is the one I've had for the last three years. We are frustrated and been isolated. I know we are not alone in this life-long battle. I started this group for parents of SCD children/ sick children with cancer.