A BMT: Andrea’s Final Battle and Hope for a Cure
Hello, I wanted to share my story about my journey with a very rare disease. I was diagnosed in 2019 as the 50th known case in the world with a genetic disorder that can lead to bone marrow failure. I have struggled throughout my lifetime with this disorder. At this time, no more treatments can help save me except a bone marrow transplant.
I am busy mom of five kids. My kids are 21, 13, 11, 5 and 3. I’m a hockey mom and a wife to an amazing, kind hearted man. I would love to tell you about my hobbies and favorite activities, but I have keep adapting what I am able to do because of a rare genetic blood disorder that requires a transplant. I can tell you, I want to be the person that can go camping with her family, horseback riding, white water rafting and even sky diving. I cannot do many activities because of the risk of severe bleeding and my body is no longer handling the anemia. Because I am losing the battle with this disorder, I am fighting for a cure.
What is needed: Because I do not have cancer, my cancer policy cannot be used even though I will go through the same treatment plan as someone with cancer. My family needs help defraying some of the costs associated with a bone marrow transplant including outpatient housing, caregiver expenses, donor search fees, prescriptions and the many other expenses medical insurance does not cover. I need to move 11 hours away to be near the Mayo Clinic where I will undergo an Allogeneic Bone Marrow Transplant. I will need an apartment close to the clinic and a caregiver for several months.
What is wrong with her? I have been to countless of doctors since I was a toddler. As of today, my blood disorder doesn’t have a proper name, but doctors have recently discovered its cause. It is known that I have a rare genetic mutation, G6b-B mutation that causes low platelets, low red blood cells and myelofibrosis. If interested my specialist gave me this Article to help me understand. The mutation has been scarring my bone marrow to the point of bone marrow failure. In the hopes of a cure and prolonged life, I am preparing to leave my family May 1, 2021. My journey with this illness has truly been lifelong. My parents also struggled helping me with this illness. Several hospitalizations and trips to the Mayo Clinic were routine for my parents. Doctors even tried chemotherapy to treat the blood disorder but nothing has worked.
Helping future patients: By undergoing this transplant, I will be part of helping future patients with this mutation.
Updates will be posted...please keep my family in your prayers. Thank you for your time.
