After 4 hospital admissions and 2 months of going undiagnosed despite being evaluated by multiple disciplines (Hematology-Oncology, Genetics, Infectious Disease, GI), Ally was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) by one of the world's most renowned HLH experts in March of 2009, at 6 months of age. HLH is a rare, life-threatening blood disorder that affects 1.2 in 1,000,000 children, and while HLH is not cancer, it is treated very much like a blood cancer. Ally immediately began chemotherapy and steroid therapy, and the search for a bone marrow donor began.
In June of 2009, at 9 months old, Ally underwent a bone marrow transplant from an unrelated/unknown donor. Ally faced many complications following transplant, and spent nearly eight months, includin...
After 4 hospital admissions and 2 months of going undiagnosed despite being evaluated by multiple disciplines (Hematology-Oncology, Genetics, Infectious Disease, GI), Ally was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) by one of the world's most renowned HLH experts in March of 2009, at 6 months of age. HLH is a rare, life-threatening blood disorder that affects 1.2 in 1,000,000 children, and while HLH is not cancer, it is treated very much like a blood cancer. Ally immediately began chemotherapy and steroid therapy, and the search for a bone marrow donor began.
In June of 2009, at 9 months old, Ally underwent a bone marrow transplant from an unrelated/unknown donor. Ally faced many complications following transplant, and spent nearly eight months, including almost thirteen weeks in the PICU, at Johns Hopkins Hospital battling side effects including severe Veno Occulsive Disease (VOD), gut Graft Versus Host Disease (GVHD), pneumatosis of the gut, and heart failure. During this time, Ally spent 3 weeks intubated and sedated, and many weeks on Bi-PAP and C-PAP while struggling to breathe. In early February of 2010, Ally was transferred from Johns Hopkins to Kennedy Krieger Institute, a rehab-hospital, where Ally remained inpatient for 2 months and received intensive feeding therapy, as well as physical therapy, occupational therapy, and speech therapy.
After 10 long months Ally returned home with her parents, and although she is still behind and has some other minor issues, Ally has made remarkable strides in all areas of development. She is now running all over the place, and has traded her crib in for a toddler bed. She is learning to count, say her ABC's, and learning her colors. Ally is a sweet, good-natured, playful, and snuggly little girl, and is loved by so many people near and far who have followed her journey. In November of 2010, an event that Ally and her family had long-awaited finally arrived, and we were blessed to meet Ally's Bone Marrow Donor, Kalika, who flew in from California to stay with Ally's family for the week.
There were many times in her journey that Ally was not expected to make it, and we have been told by countless doctors that she is an absolute miracle. We are so blessed to have such a beautiful, happy, and healthy little girl, and she continues to amaze us each and every day.
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