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Team Rocco ( HLH )
Rocco Buzzeo, was Born on: 03/29/99 healthy 6 pounds and 12 oz. 
Our Family's journey began in March 17,2011, Rocco went for a physical for sports for school in which he told his Doctor that he had pain in his left side, so the doctor checked him and told me to take him for a blood work just to confirm everything was ok. I received a call from Rocco's doctor in 4 days and was told to bring him back for more blood work because the count for his blood cells were low. The results for the second test came back and it showed that it was very low, that is when I was told to bring Rocco to Danbury Hospital for transfusion and more test to see what is  going on.  We were then transferred from Danbury Hospital to Yale New Haven Hospital for more tests on march 27 - 30, 2011, it turned out to be that Rocco was diagnosed with  "Pancytopenia"  they also checked his bone marrow which showed Trilineage Hematoiesis, plent megakaryocytes. He was Diagnosed with "Autoimmune Hemolytic Anemia", they also discussed that he has an enlarged spleen. Rocco was in and out of the Hospital with high fevers, up to 102 -104, they had to do more tests to see what is going on. On April 29,2011, Rocco was diagnosed with Secondary (HLH)-Hemophagocytic Lymphohistiocytosis, unknown mutation, In Yale New Haven Hospital, he had undergone his initial 8 weeks of treatment, but unfortunately there was no improvement; so on June 28,2011 he was transported to Cincinnati Children's Hospital for more treatments.
No BMT- On Aug.30,2011 Rocco was scheduled to begin the preparative regimen which consisted of 5 days of Campath-1H 0.2mg/kg IV/subcutaneous, then one day of rest without any treatment, and after that he would have started another treatment of 5 days Fludarabine 30mg/m2/day IV(if<10 kg 1 mg/kg), 1 day Melphalan 140 mg/m2 IV(if<10 kg 4.7 mg/kg). Rocco needed 2 days of rest to prepare his body for the bone marrow transplant, which is known to be a long process with many possible complications. But unfortunately his weak body couldn't hold for that long.
Rocco never made it to his preparative regimen, Rocco passed away on August 29,2011
About Hemophagocytic Lymphohistiocytosis (HLH)
HLH is an extremely rare blood disorder that causes an influx of Histiocyte white blood cells which are overly agressive. To understand this disease we had to first learn about Histiocytes. TheHistiocyte's job is to clean dead cells from the blood and send them to the liver and spleen for recycling. Histiocytes live in the bone marrow and attach themselves to organs to help fight infections and perform clean-up. With HLH the histiocytes no longer just clean-up dead cells but also attack the red blood cells and platelets. This causes the person with HLH to have lower amounts of energy and less ability to clot which causes excessive bleeding.
Hemophagocytic lymphohistiocytosis (HLH) is an unusual syndrome characterized by fever, splenomegaly, jaundice, and the pathologic finding of hemophagocytosis (phagocytosis by macrophages of erythrocytes, leukocytes, platelets, and their precursors) in bone marrow and other tissues. HLH may be diagnosed in association with malignant, genetic, or autoimmune diseases but is also prominently linked with Epstein-Barr (EBV) virus infection. Hyperproduction of cytokines, including interferon-g and tumor necrosis factor-a, by EBV-infected T lymphocytes may play a role in the pathogenesis of HLH. EBV-associated HLH may mimic T-cell lymphoma and is treated with cytotoxic chemotherapy, while hemophagocytic syndromes associated with nonviral pathogens often respond to treatment of the underlying infection.
(HLH)- is so rare that even some doctors haven’t heard of it. It primarily affects children — about one in 1.2 million. HLH originates in the bone marrow, the spongy tissue inside some bones that contains stem cells. The disease causes these cells to malfunction and destroy the body’s own red blood cells, white blood cells and platelets. It can cause permanent damage to the spleen, liver and central nervous