Thanks for caring about our family and our daughter’s medical journey. Tip: Bold print is the abbreviated version for our super busy family and friends. Regular print is for those who like more details.
Alyssa is our sweet 10 year old, now starting her not-so-awesome medical journey with the rare disease C3GN, about 1 in a million. She also has a slight clotting Factor 11 deficiency, another rare condition, about 1 in a million as well.
She is 1 in a trillion!
My Latest Posts
- Aug 18, 2025. Chugging along.Ah. I haven’t updated in a year 😏. Medically, there’s not much to update. She has been doing well on the trial medication, pegcetacoplan. She has been blissfully living as a normal child for the past year. ☺️ Not gonna lie, I really enjoyed not updating this blog for a year. No more inquiries aboutContinue reading “Aug 18, 2025. Chugging along.”
- Aug 25, 2024. Progress!Here is the graph of proteins in Alyssa’s urine over time. Her latest results are so low which is WONDERFUL, GOOD NEWS. 🥹 Low is good. This shows that her kidneys are working well with the trial medication pegcetacoplan. ♥️. This was even right after she got Covid! We are so thankful for this trial. Also,Continue reading “Aug 25, 2024. Progress!”
One in a Trillion: Alyssa’s medical journey 