Evelyn Loso vs Aplastic Anemia

Evelyn Lavender is six years old. She loves Lily and Madeleine, Taylor Swift, Adele, Nutella, and unicorns. She dreams of becoming a gemologist, and already has quite the rock and mineral collection. She’s been through more in the last few months than any kid should have to. She’s never complained, and she’s never forgotten to thank the nurse that just poked her for the fifteenth time that day. She is unbelievably brave. She is the daughter of Fabian and Malinda Loso. This is her story.

On the first of April of this year, Evelyn’s mom took her in to see her doctor because nosebleeds and bruising had become a daily occurrence. Her blood counts were severely low, with a platelet count of only 4,000 (the normal range is 150,000 to 430,000) putting her at high risk of internal bleeding. By midnight that night, Evelyn was admitted to Primary Children’s Medical Center’s Cancer, Blood, and Transplant ward. The doctors initially were almost certain she had leukemia. After three days of tests, including removing bone marrow from her hip, revealing that she has only 50% of it left, they realized it was something much more rare than leukemia, and normally only found in adults. On the fourth of April, she was diagnosed with Aplastic Anemia, a very rare bone marrow failure disease. While they've been treating it with blood transfusions when needed, the very best chance of curing the disease is undergoing a bone marrow/stem cell transplant from a sibling donor. Unfortunately, neither of her biological siblings are a match, and doctors will very rarely even consider a transplant from a non-sibling donor due to the high risk of graft vs host disease. While she is stable at the moment, it is a very fickle disease and her prognosis could change rapidly, necessitating a transplant. They’ve seen her numbers rise and become hopeful only to see them drop again just as rapidly. In order to give Evelyn the very best chance of a healthy life, her parents found an in-vitro fertilization clinic and a genetics lab that would help them in becoming pregnant with a matching sibling. Happily, they got one genetically compatible embryo, which will hopefully turn into a successful prenancy. If Evelyn does need a transplant, the stem cells from the the baby's umbilical cord blood (which will be banked at birth) will be used in the transplant, leaving the baby unharmed. As you can imagine, this is an extremely costly endeavor, none of which is covered by insurance. The family put down all the money they had as well as securing a substantial loan to pay for the lab that would be testing Evelyn, her parents, and the embryos.

At the time all of this began, the family was very stable financially, and had no worries about putting down everything they had in an effort to help their daughter. Even though Aplastic Anemia is a very costly disease (averaging $780,000 per year to treat in the US), the family had a solid source of income and good health insurance. However, since August, due to depleted savings, and the need to find employment that better suited the family's situation, they no longer have an adequate monthly income to keep up with demands of this costly situation. Because of that, they have no way to pay the more than $40,000 in medical bills they already have, as well as those that are sure to come. The family is doing everything they can to stay afloat, including selling their home and moving to a smaller one, trading their cars for less expensive ones, and selling the majority of their furniture.
Even six months ago, they couldn’t have imagined being in a position that would require them to ask for help, but life can change very quickly, and now they need it. Anything you can do, even just passing it along, will be so, greatly appreciated. Much Love to you all!