In February of 2017 my nephew, Cayden developed a rash that was accompanied by a fever and cough. The doctor said it was possibly allergies or a virus and prescribed antibiotics. The antibiotics temporarily reduced, but not eliminated his symptoms. After the symptoms returned full force, more antibiotics were given.
Cayden was on and off antibiotics multiple times over the course of four months before being referred to an immunologist. Various tests were conducted and a diagnosis of Agammaglobulinemia was made. He was sent to Texas Children’s for a 2nd opinion and the diagnosis was confirmed.
In our bone marrow, there are pluripotent stem cells. Pluripotent means these stem cells can develop into a variety of cell types. For our journey, the stem cell becomes a Lymphoid Precursor cell, which turns in to a Pro-B cell, then a Pre-B cell, then into an Immature-B cell. Remember, this is all in the bone marrow.
The Immature-B cell then travels to the Spleen to become a Mature-B cell. It then moves into the blood and becomes a plasma cell. Plasma cells produce immunoglobuline or antibodies to circulate in our blood and fight infections.
Cayden’s X chromosomes have a mutated and ineffective BTK (Bruton’s Tyrosine Kinase) gene. The BTK gene is used to build B cell receptors in the Pro and Pre-B cell stage. Without properly built B Cell receptors, the Pre-B cells never become an Immature-B cell, thus hindering their journey to the spleen to mature. Without Mature-B cells leaving the spleen, and going into his blood, there are no plasma cells. Absence of plasma cells means no immunoglobuline to circulate throughout the blood and fight infections.
So, Agammaglobulinemia is a genetic disorder passed down widely to males. This is due to the one X chromosome they have. Babies do not typically show symptoms of this immune deficiency until after 6 months. This is when the mother’s immunoglobuline, transferred to the baby by placenta during pregnancy, begins to diminish. There are also T cells in our bodies that can fight certain viral, fungal, and protozoal infections, even without the presence of B cells.
What’s the big deal?
With agammaglobulinemia, there is in an increased risk of developing infections. Sore throat, ear and sinus infection, bronchitis, and pneumonia are common infectious symptoms in a person with agammaglobuinemia. Cayden was diagnosed with all of these at some point between February and June.
More severe infections include the viral infection coxsackievirues which causes hand, foot, and mouth disease. HFMD will cause a rash; one of the first symptoms in Cayden. There is also no protection against the protozoal infection Giardia Lamblia. This occurs in our guts, and is usually neutralized by immunoglobulines.
Another risk for serious infection live vaccines such as polio, measles, and mumps. Theses strains can be fatal to someone with agammaglobulinemia.
Can Agammaglobulinmia be treated?
YES! Those with agammaglobulinemia require blood infusions for the rest of their lives; it is uncurable. Cayden’s first set of treatments were intravenous and took place at the hospital.
After Cayden’s diagnosis, the insurance company approved only four treatments. Those have been done and his health has already improved! He has gained weight, color, and his cough has significantly reduced.
Now, Cayden's parents, Christina and Josh have been approved to give him treatments at home. Keep in mind that approval from the insurance company does not mean financial coverage. High deductibles and co-pays must be met first.
Moving forward, Cayden and his family need your help covering the cost of past and future medicine expenses.
Without this medicine, Cayden will have an increased risk of illness; sickness as common as a cold can be fatal. Simply attending school will expose him to infections that could quickly turn bad.
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