Lorena was born on April 13, 2017. She was born with severe hypotonia and was respiratory compromised and doctors didn't know why. After being tested for more than a year, on June 2018 we finally got a diagnosis! The geneticist told us that she has an autosomal recessive gene mutation called TBCK Syndrome and that both parents were the carriers. This condition causes hypotonia, developmental delays and changes in the brain anatomy. Besides that diagnosis we found out that she also had a heart anomaly(right-aortic arch and an aberrant subclavian) and that she required open heart surgery, so on June 12 she had her surgery and thank God everything went well with surgery and her recovery! Several months later, the ENT told us that we had to sumit her to another surgury because she wasn't breading well and they confirmed it with a bronchoscopy. On November 2018, she was submitted to surgery for her upper airway. My little warrior won another battle and she recovered like a champion! We just moved from state, so we had to start from 0 again with all her specialist and therapists. It's been 5 months and she still doesn't have her therapist because she is un a waiting list and the insurance is not covering for new medical equipment that she requires! So I'm trying to get as much help as I can, because this is a long journey that waits ahead of us! This is just the beginning of a wonderful story that I know one day we'll look back and will tell others the miracle of life of Lorena Victoria!