Nadia Bjarnason is a 2 year old girl from Kelowna BC, Canada, who has been been diagnosed with Dyskeratosis Congenita. Nadia recently had a bone marrow transplant.
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A Brief History of Nadia
Born at 33 weeks, and 2 lb, 15 oz pounds, we knew from the start, this little one would have a fight ahead of her…. (more)
Nearly two years later, Nadia has grown into a small, but mighty, happy toddler, who loves making people laugh, anything Scooby Doo, and would spend the whole day on the park slide if she could. Those who know Nadia, know that she has only two gears…park… or full throttle, which makes it no surprise that she will come in from a day of play, like a soldier from battle, with the random bruises to show for it. But lately, those bruises have appeared at the slightest bump and take a long time to go away. In late August this year, our little brown eyed beauty went into bone marrow failure, which we soon learned was caused by dyskeratosis congenita. On Feb 24, 2014, Nadia had a bone marrow transplant at BC Children’s Hospital in Vancouver.
Bone marrow is the tissue in Nadia’s bones that are needed to produce new blood cells: red, white, or platelets. Because her bone marrow is not producing some of these or enough of these blood cells, she is extremely susceptible to infection that could be fatal, or bleeds that won’t clot, even with the slightest of bumps or scratches. Bone marrow failure can cause premature death and overwhelming infections associated with immune deficiency.
Over the short term, doctors can treat her bone marrow failure with medicines that help build up levels of blood cells, and transfusion when her levels drop to dangerous lows, but the only hope for a cure is for Nadia to receive a hematopoietic cell transplantation (bone marrow transplant). Fortunately, we were able to avoid any blood transfusions prior to being admitted to hospital for bone marrow transplant.
Prior to receiving the transplant, Nadia went through “conditioning,” high doses of chemotherapy in a short period of time, to prepare her immune system to accept the donor stem cells, and to reduce the risk of her immune system reject and destroy the donor cells. Unfortunately, children with dyskeratosis congenita are very sensitive to the side effects these treatments. We were told to prepare to be in Vancouver for approximately 3 months.
So here we are… shocked by the diagnosis handed down to our beautiful daughter, faced with watching the effects of this terrible disease, and fighting to survive the possible side effects of the bone marrow transplant.
