Welcome to our CaringBridge website. We've created it to keep friends and family updated about Rhiann's conditions. Get started by reading the introduction to our website and Rhiann's Story.
Severe Aplastic Anemia was almost unheard of when Rhiann was diagnosed in 2009; there was nothing on the Internet at the time on SAA ( took approximately 6 months before she was diagnosed). We do not know how she acquired SAA; this is not genetic, the theory (from her doctors of Children Hospital Boston, Georgetown, and Duke) was that she got mononucleosis that went into her bone marrow and stopped all blood productions. Rhiann was immunocompromised before the transplant which was very dangerous on top of GVH. Stem Cell Transplant was new as well (2010), especially for an unrelated donor. Rhiann’s received two unrelated cord blood transplant that was 4 out of 6 HLA. 6 out of 6 is perfect Rhiann did not have matching siblings. The two babies Cord blood donors were unrelated and with two different blood type. Stem Cell was the only cure if it works. That was our only option to try to save her. Rhiann passed from transplant complications.
Hi, my name is Rhiann. I am 8 years old. I enjoy drawing or any kind of art project. I love to dress up, play outside, and love spending time with my family, especially my siblings. I love to help my mom garden. I love the beach, playing in the pool, and playing the Wii.
I had a normal life up until I was 6 years old when I was diagnosed with Severe Aplastic Anemia (SAA) (very similar to the “ Boy In The Bubble” ) Mine is not genetic. SAA is a blood disorder in which the body's bone marrow doesn't make enough new blood cells, not enough to survive. I cannot fight infections. Prior to transplant, I had Immunosuppressive Therapy (IST with ATG) and within less than a year I had over 60 red blood transfusions and over 80 platelet transfusions. I underwent a Double Cord Blood Transplant at Duke Medical Center on October 14, 2010, after the transplant I had to face more challenging life-threatening complications from viral infections, bacterial infections, fungal infections, and Severe Graft Versus Host Disease(GVHD).
Since then have been re-admitted three times for GVHD, Posterior Reversible Encephalopathy Syndrome, Pericardial Effusion, and Pneumatosis. I cannot return home to Maryland yet because of these complications. In between hospital stays my mom and I have been living in a hotel close to Duke Medical Center for the last 7 months.
Happy 21 birthday to Rhiann. We miss her and think of her every day. Charlie Rhiann's nephew will be 1 year old at the end of March, and her niece Delilah will be turning 4 years old in a few months. Delilah's personality and demeanor are so much like Rhiann's; they like the same things. Tinkerbelle dresses up like a princess, eats sweets, walks fast, and is not timid or afraid of anything. She is very protective of her brother, as Rhiann was protective of her siblings; she once scolded me for punishing her siblings. Delilah knows who Rhiann was, recognizes her pictures, and knows that her middle name is the same as her aunt's.
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Delilah
Charlie
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