Roshlind Kate Mance was born August 28, 2002 in Winnipeg, MB to filipino parents Benny & and Jophine and big sisters Adrienne and Kirsten. Our family moved to Calgary, AB in 2007 and Roshlind was set to start her grade 11 year in the fall of 2018.
Our whole lives changed when Roshlind aged 16, was rushed to urgent care on July 11, 2018 in what doctors said was in “life threatening condition.” Her blood cell and platelet count was abnormally low and she was in excruciating pain from the legs up and was covered in baseball sized bruises. On that day alone she received multiple blood transfusions and underwent many tests, x-rays,blood cultures and ultrasounds; all with no findings of what was causing her pain. She was immediately rushed to the Alberta Children's Hospital.
During her 3 week stay in the hospital she was diagnosed with Aplastic Anemia. This is a rare and serious disease that happens when your bone marrow fails to produce enough blood cells. So basically your own immune system attacks and kills your bone marrow stem cells which are required for blood cell production. When they are killed, your blood count falls, often to very low levels, which in return causes fatigue and tiredness, bleeding and bruising and increases the risk for infections.
A week later our hearts broke a second time when the doctors also diagnosed her with Paroxysmal nocturnal hemoglobinuria (PNH), which is yet another very rare, chronic and life-threatening disease of the bone marrow that affects the blood and major organs. PNH causes red blood cells to break down sooner than they should and this early destruction can lead to symptoms and complications that range from minimal to severe which can include leukemia, thrombosis and strokes. PNH affects 1-1.5 persons per million of the population.
Since being discharged from the hospital, Rosh goes to the hospital twice a week to receive platelet and blood transfusions to keep her blood level as close to normal as possible and to give her some much needed energy. The treatment for Aplastic Anemia is called Immunosuppressive Therapy (IST). And the treatment for PNH is called Soliris and is unfortunately one of the most expensive drugs in the world. The cost bi-weekly is $28,000. The monthly cost is $54,000. And the yearly cost is $500,000. Because PNH is so rare and the medication is so expensive, Roshlind’s team of doctors had to apply for funding to the government for eligible drug therapy where no other funding options are available through the public or private system. We recently found out that Roshlind's funding was not approved.
The cure for both of Roshlind's diseases, if she does not respond to treatment is a bone marrow transplant. Siblings are a best potential match for a bone marrow transplant at a 20% chance, and parents at 5%. Everyone else in the family such as grandparents, aunts, uncles, cousins are basically considered strangers.
Our world came crashing down when we found out that nobody in our family came out as a match for Roshlind.
During this dark time our family found comfort in the story of Bille Nguyen and his family's quest to find him a match. Although the statistics of finding a match within the asian community is stacked against us, we know that we not alone in starting our own search for a potential match for Roshlind. We cant thank the Nguyen family enough for paving the way for families like us. And we can only hope to continue in their footsteps in raising awareness for different ethnic groups in registering to become a donor.