We are writing on behalf of our daughter, Annalyse. She was a happy, healthy vibrant 5-year old, looking forward to entering Kindergarten, when she was diagnosed with not one, but two, life-threatening bone marrow diseases. We had noticed a disturbing amount of bruising. However, the day her older sister grabbed her and left a handprint, in the form of a bruise, we knew something  was wrong.   Suddenly we  were  thrust into a parent’s worst   nightmare.  Instead of going to Kindergarten, Annalyse was going to The Cleveland Clinic. Instead of sending our youngest child off to school to make new friends, we watched her go through bone marrow aspirations (think BIG needle in your back), endure countless traumatic blood draws and chemotherapy. We spent her Kindergarten year at home, unable to let her run and play and wore face masks if we dared to venture outside.

We were told she most likely had Leukemia, which might have been a better prognosis since more funding and treatment options exist for childhood Leukemia.  Ultimately Annalyse was diagnosed with both Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria, or PNH, both of which are very rare life-threatening bone marrow diseases. Both are considered “orphan diseases” and therefore have very limited funding.

Aplastic Anemia is a non-contagious disease that occurs when the bone marrow stops making the amount of cells that the body needs: red cells, which contain hemoglobin and deliver oxygen to all parts of the body; white cells, which help fight infections; and platelets, which help blood clot when we bleed. In Aplastic Anemia, there are not enough stem cells to produce these cells. There are many, many people, as we speak, that are being kept alive by red blood cell and platelet transfusions.  In PNH, many of the stem cells that remain are defective. Both are curable only by a bone marrow transplant. This is not a good option for Annalyse, as neither of her sisters are a match for her and no “perfect” match for her has been found in a worldwide search.

We have been very blessed that Annalyse responded well to treatment.  However, we know that she could relapse at any time. We also know that there are many others who have not been so lucky. Aplastic Anemia has claimed many lives, including Eleanor Roosevelt and Madame Curie.  For those who do not respond to chemo and are not candidates for transplant, there are few options.

Only a handful of Doctors in the world specialize in Bone Marrow Disease. We are extremely fortunate that we have one of the best in the world right here at The Cleveland Clinic, Dr. Jaroslaw Maciejewski.    He believes there is a genetic factor that coupled with an environmental trigger is responsible for the onset of the disease. It is also believed that other diseases, such as leukemia, lupus, some forms of heart disease and others, have a viral trigger. The research he is proposing could ultimately affect millions! Please take a moment to read the attached information about him and the research project we are raising money to support.

We have established The “MAKE IT HAPPEN 4 BMD ” foundation in which all proceeds will be directed to research in Bone Marrow Diseases and Cancers.  All proceeds of this fundraiser will go directly to Dr. Maciejewski’s research at The Cleveland Clinic Taussig Cancer Institute.

Only fifeteen years ago, Aplastic Anemia was considered a fatal disease. Even now, PNH has an average life span of only ten years after diagnosis.  Please help us to help those who are suffering, by being a part of our “Jungle Jam” event in a significant way! We thank you, Annalyse thanks you, and so do the thousands and thousands of others who are desperate for a cure!

Sincerely, Sherri & Jeff Kitzberger