Please allow me to introduce my beautiful little 7yr Princess, also known as Charlotte Toste Braga. At a time like this I wish I was an eloquent writer or poet to be able to capture her true essence as I see her so you too can see the strength, love and potential contained within her. But as a dad that will do anything in this world or the next for her, I will do my best.
Starting from a young age it was clear how she cared for others more than herself, wanting to give her toys to her cousins and friends. Tea parties, playing doctor fixing boo boo’s, and being a mommy trying to make everyone feel better when they were sad, even if it was apparent or we tried to hide it. It was clear, her heart beat to be a person that helped the world and was destined to make it a better place. A heart that beat to the rhythm that God taught her. One to help others that had what we would soon find she had...
Severe Aplastic Anemia….. These words were uttered to us from the doctor’s on April 29th, 2014…. At first it was a relief, because when she was admitted all signs as the doctors could detect pointed to Leukemia until the results from her first bone marrow biopsy. Relief was quickly replaced with the same despair that any other parent felt when they’re child was diagnosed with a life-threatening disease…
What is SAA? A very rare blood disorder disease in which the bone marrow does not make enough blood cells for the body that effect 1 person per million. The blood cells your body needs are: red blood cells (to carry oxygen), white blood cells (to fight infection), and platelets (to control bleeding, internal organs and externally).
Today she is surviving with blood transfusions of Platelets and Red Blood on a regular basis. As of the week of June 23rd she received ATG treatment because she cannot live off transfusions alone indefinitely. This treatment is also known as an auto immunosuppressant therapy that kills off all her own T-Cells in hopes that this is the root cause of the bone marrow failure. But sadly most cases of Aplastic Anemia are Idiopathic, meaning not known. Unfortunately this treatment is not a cure. It’s merely the next course of action that is considered standard protocol. The only cure is a Bone Marrow Transplant.
Thus far thankfully we have been able to continue treatment without interruption. But much of this is not covered by insurance along with many upcoming procedures that are required to achieve our goal of curing Charlotte. So please help us and be in Charlotte’s Corner to fight this terrible disease that no child should ever have to suffer, especially before even experiencing life!
Rui Jorge Toste Braga (aka Charlotte’s Daddy)
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