A Cause for Kylie, New Lungs- New Life !

UPDATES:

Kylie and our family made it to TX where Kylie's team of doctors have been working around the clock to develop her treatment plan and plan for her future. She was able to come off of the breathing tube recently and had a trach placed. This will provide Kylie with the opportunity of a much better quality of life until she get new lungs. On February 7, 2024 we got the news that the board plans to go ahead with the listing process and that Kylie should be officially listed within the next week. This is one of the biggest answered prayers and hurdles that we have been facing. Through support from people all over we have been able to be by her side and she has been blessed by hundreds of people with donations, toys, and most of all love and prayer. We cannot even begin to express our gratitude, but we know that all the glory goes to God. We are still awaiting a house or living space to become available for us, but we know that God will provide our every need through many avenues. We believe Kylie will get her new lungs and we hope you will continue to pray with us for that as well. Again, thank you from the bottom of our hearts- we have been blessed beyond measure !

ORIGINAL STORY:

Hi, my name is Ashley. My daughter was born on November 10, 2023 at St. Francis hospital in Midlothian, VA. She was immediately placed on a ventilator and has been on a ventilator everyday of her life the past 62 days. She was initially transferred to St. Mary's hospital in Richmond, VA and then was transferred to VCU Hospital in Richmond, VA where they were finally able to provide a diagnosis, surfactant B deficiency. There is no cure or treatment for this disease. Of all the babies to ever live with this disease, they only lived about 99 days. In order for her to live, she will need to receive a double lung transplant. There are only a few hospitals in the country that will do a transplant for this disease, including one in TX. In order to get on the transplant list again, we have to get her transferred to TX immediately to be evaluated. We will be leaving in the next few days departing to TX, with our little angel. We are doing everything we can to give her the best chance at life. WE have two other children McKenzie (9) and Caden (1). It does not even feel like we are living real life right now, just a some sort of nightmare.

In order for Kylie to get approved for the transplant, she cannot decline in her health. This is a fine line, a tightrope if you will, and something we feel like is impossible that we are up against. We have to do what we can to give our girl a fighting chance, so going to TX is our best option. We have financial commitments here, and no way to continue receiving income once we immediately arrive there. The medical bills are already pilling up and there will be living expenses that we will incur during our time there. Truly anything we receive whether money or prayers or thoughts, we are beyond grateful for. Please continue with us in this fight to keep her alive. OUR GOD IS GREATER!