I seem to meet a new family who facing the challenges of Alpers each week. My heart goes out to them and I want to be there for them! We didn't have anyone when our son got sick almost 5 years ago...but now, there is this little community forming that is getting louder and stronger every day! I remember what it was like before Averie's diagnoses, we didn't understand what had happened to our son. We didn't understand Alpers. The name Alpers had been thrown out there as an underlying cause for why Lane was sick, but all we understood was the devistation that it caused. At the time we were told it only affected children under the age of three, so when Averie turned 4, we naively thought"Thank God! Averie won't be sick!" Then June 11th 2008, she began to complain of a headache so I had her take a nap with the expectation that sleep would cure it. She woke up; throwing up and we realized she couldn't see us. She was really scared....we were really confused and then we saw the seizure activity in her eyes. It was deja vous! It was like looking at Lane's eyes. Immediately we got her to the doctor and thankfully they got her seizure stopped because we were able to alert the medical team to our family history. She needed to be intubated due to high CO2 levels and they began a series of tests to find the cause. The doctors poured over Lane's medical history and were able to rule out many things right away. It took four more PICU stays, a muscle biospy, and countless blood tests before we confirmed the Alpers diagnoses. I remember the call clearly as Dr. Metrick, Averie's neurologist, told me that Averie suffered from Alpers and they had confirmed it to be the cause of death for Lane. I remember sinking to the floor and crying as I thought about the years of unknowing that surrounded Lane's death. That chapter had finally closed, yet I kept thinking...we have to do this again? What does this mean...she is different from her brother. We won't let her take the nasty Valproic Acid that became a toxin in her brother's body! Her doctors know more than they did 3 years ago, and she seems so much stronger than Lane did!
And so far, the meds HAVE been working. No major seizures since Sept. 08. She has days like today, when she is fighting a cold, that she is extra shaky...has dark circles under her eyes, but she is still here...still fighting...still somehow not progressing as they told us to expect. She is my little She-Ra! My little Wonder Woman! I pray everyday that there is something in her that will be the answer another family is praying for. I don't know, but I sense a bigger purpose here.