Most recently, my team of specialists have a theory about what's causing my body to act this way, and I will be receiving genetic testing soon to verify the diagonis of Atypical-HUS (a very rare, life-threatening, progressive disease that frequently has a genetic component). In most cases, it is brought on by an infection in the body (my appendicitis). The symptoms are characterized by low levels of circulating red blood cells due to their destruction (hemolytic anemia), low platelet count (thrombocytopenia) due to their consumption, and inability of the kidneys to process waste products from the blood and excrete them into the urine (acute kidney failure), a condition known as uremia.
Although this only effects 1 in 500,000 people, there are some effective treatments (including platlet transfusion, a new drug called Soliris, and kidney transplant). This is something I will battle the rest of my life, but I'm glad there is a name for what is making me so sick. Now we can fight it!
At this point, my parents have had to move the family from their home in the mountains of Colorado, to Denver. My daddy isn't able to make it to work right now, and we are struggling to make ends meet (paying the mortgage and utilities, gas for traveling, food for three.... not to mention the mounting medical bills).
We are unsure of how soon I will be able to get out of the hospital, and it would be really awesome if you could spare a small donation, so my parents can focus on getting me better and not worry about where their next meal is coming from.
My auntie said she will give you the highlights of what's happened to me this past week. Thank you for reading about my condition. I appreciate all of the love we've received since I fell ill!
June 3, 2017. Ashton falls ill. He is lethargic to the point of not being able to walk, vomiting, and complaining about his tummy hurting. The hospital decides it's likely a ruptured appendix (WBC at 36,000, critically low sodium level, possibly septic). They can't do surgery until his levels stabilize.
June 4, 2017. Ashton goes into surgery for ruptured appendix. Surgeons find appendix is not ruptured, but inflamed, so they remove it. They also find internal organs are "bruised", but there are no outward signs of blunt force trauma.
June 7, 2017. Ashton's levels have slowly increased with help from IV injections and nutrients, but his swelling has slowly gotten worse, and his pain and mood are still poor. It is now apparent his chest is heavy with fluid, as his breathing is labored. Physical Therapist is concerned and orders X-rays. Ashton is rushed into surgery, where they place a PICC line, add drain tubes to his belly, and place a catheter. Upon surgeon's recommendation, he is trasferred by ambulance to the Children's Hospital in Denver.
June 8, 2017. Ashton is feeling much more like himself! They have removed over 600cc's of fluid from his chest/tummy and he is now joking around and laughing with family members. Specialists at Children's have a theory about his condition, and make a tentative diagnosis of Atypical-HUS (aHUS).
June 9, 2017. Specialists order genetic testing to be done, in first big step toward making an actual diagnosis.
- Angelina Saldivar
- Shannon Lillmars
- Dianne Erdman
- Colleen Decheine
- Joy Robinson
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