Hi all! On Aug 7th, 2019, my life was changed forever, in the best way. My daughter, Malia, was born. It wasn't but a day later that we were told her liver was not functioning. Her liver enzymes were 100 times the normal limit. The hospital tried the lights for jaundice but after several days they knew that newborn jaundice was not the issue. They sent us straight to Texas Children's hospital to a Hepatologist. The next week was one of the hardest i I have gone through. The testing was horrific. I will spare you the details there. They weren't sure if my baby was going to survive. The worst case scenario was Biliary Atresia which is what they were leaning towards and was going to cause her to have invasive surgery at just 2 weeks of age. Thankfully, on the morning of her liver biopsy, we were told that they were able to rule out Biliary Atresia which was music to ours ears. What we were not expecting is to hear she has "Alpha 1 antitrypsin deficiency". We had never never heard that term before but in short - She has a genetic mutation that can cause liver and lung disease and there is no cure. She might need a liver transplant if her liver does not improve. The guilt I felt in the following days was unreal, how did we give our child this condition that we never knew we carried. Even after doing genetic testing prior to getting pregnant. Thankfully, our sweet angel, with liver medication, improved tremendously over the next 3 months. November 2019, we got cleared for check ups only every 6 months. This was wonderful news and we felt so blessed, as many in our Alpha 1 community have not been as lucky. We will continue our annual liver & lung check ups at Texas Children's Hospital. Her liver disease is currently stable. We feel blessed every day that she wakes up and has her health, but we know tomorrow is never promised so a cure is all that we can hope and pray for. We are hopeful that we will see the day that we celebrate a cure with our alpha 1 family and friends. A day that we know our family members will not be limited by this genetic condition that they have no control over. We work daily to keep our baby girl healthy for as long as possible avoiding unnecessary germs, aerosols, bleaches, pollution, fragrances and most of all, smoke of ANY kind. I will be posting more throughout the month of November as it it Alpha 1 awareness month. If you could please donate and share my page to help spread awareness for Alpha 1 and help us find a cure. We can't do this alone and the more people that spread the word, the closer we are to that day we have all been praying for.