Thank you, thank you, thank you for your donations! Dr. Nester’s group deeply appreciates the gifts and support. We are truly, deeply grateful.
Alyssa has completed her year long trial and has responded well to the medication! This trial has gone well, and she now advances onto the extended trial, which goes on for at least 2.5 more years.
On this trial, she has been the 2nd best responder to pegcetacoplan and is back in remission. ❤️ That is wonderful. Unfortunately, she also is still leaking a teeny-tiny amount of proteins, we don’t know how long her kidneys will take to heal from the damage her disease has already caused. We do know that it is not yet severe enough to be symptomatic. It’s not like we had or have any other options. Thank goodness for this timely trial.
Alyssa is happily living her early teen life, drama and all. It’s great to see her with energy, as she had previously been constantly tired. She moves well, unlimited. We ask for prayer that the drug will not cause serious adverse reactions or side effects. This is a trial drug. While there is data for its use for other conditions, we still don’t know much about long term effects.
When she was first diagnosed, it was so terrifying and heart-rending. Reflecting on our journey thus far with her medical condition, we have been broken, remolded and restored. We humbly recognize the grace by which we stand and thank God for not forgetting us.
We thank Dr. Nester and her team for intervening and giving Alyssa more health. What a landmark. One year ago we fearfully yet hopefully started Alyssa on the trial, and now we are at the other end extremely grateful for this past year and look forward to the future.
Below are 4 pics where you can see how she physically changed over the years since her diagnosis
One in a Trillion: Alyssa’s medical journey 