My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease. He was born with ABCA3 surfactant deficiency and most do not know about this disease. He does not produce the surfactant in his lungs to transport the oxygen in his blood stream correctly. It can also cause his lungs to stick together if they were too close. Brayden cannot oxygenate on his own so he requires a ventilator to do the work for him. He has been fighting since day one.
Four hours after he was born, he was transported to Children’s Hospital in Columbus Ohio. He has been there ever since and he is completely dependent on the ventilator to breath for him. There is no cure for his disease and the only option for him is to have a double lung transplant.
About a month-and-a-half after his birth, Brayden was put on the transplant list awaiting his new organs. The doctors tell me this is not a cure, and that it’s going to be a lifelong regimen of medications to keep him from rejecting. Also, the survival rates for transplants are not the best and there is a fifty percent chance he may not make it past the age of five.
It’s a day to day battle for Brayden and he is on sedation’s to keep him comfortable. So far he is has been the best little fighter a mom could ask for. This is Brayden’s story and I am hoping for more to come.