Her laugh was contagious. Her energy, boundless. Her fierce love for her family, breathtaking. All who met Lina Nessouli came away with the same impression; what a vibrant and beautiful woman.
Lina Nessouli was born May 20, 1955 in Beirut Lebanon. She moved to the United States with her new husband, Taref, in 1975. Early in their marriage, Lina was diagnosed with essential thrombocythemia, a myeloproliferative disorder that causes the bone marrow to overproduce platelets and for which there is no known cure. Lina was not given any medication for her condition, nor did she suffer any symptoms.
They raised three children, Maya, Dania and Fouty and lived a charmed life in Atlanta for over two decades. In that time, Lina received her bachelor’s degree in interior design, became a much loved member of her community and nurtured her children into adulthood. In March 2007, just two months after her first grandchild was born, Lina was diagnosed with a rare disease called myelofibrosis.
Myelofibrosis is a myeloproliferative disorder in which bone marrow is replaced by scar tissue thereby impairing the body from producing new blood cells and causing severe anemia among other symptoms. As a result, blood cells start forming in other organs such as the spleen which causes those organs to become enlarged. It is a debilitating disease that has a prognosis of approximately five years from the time of diagnosis. The cause of myelofibrosis can be idiopathic in nature, or it can evolve from other myeloproliferative disorders, such as essential thrombocythemia or polycythemia vera. The only possible cure is bone marrow transplant which carries with it a high risk of failure or relapse.
In the face of her diagnosis and worsening anemia, Lina continued to live her life to the fullest for the next three and a half years. She traveled the world with her husband, doted on her children and her sons-in-law, went out with her friends and reveled in her grandchildren. Despite Lina’s unwavering will and diligence in seeking treatment, in January of 2010, her illness began progressing inexorably . Although she seeked treatment at three institutions, her health deteriorated, and she became transfusion dependent and extremely weak. By August, her condition progressed into acute leukemia. On October 12, 2010, after nine courageous months of fighting, Lina Nessouli lost her battle with myelofibrosis at the young age of 55.
Lina was the epitome of grace, warmth and tenacity. She was a remarkable woman, a beloved wife and a cherished mother. She leaves behind a legacy of love, strength and generosity. Her family and friends will honor that legacy with Lina’s Wish, a foundation which aims to find a cure for myelofibrosis. Lina’s heroic spirit will live on not only in the hearts of the people who will always love her, but also through the hope that Lina’s Wish will bring to those afflicted with this devastating disease.
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