I promised more babies, so allow me to introduce you to Kieran. Kieran was born with a genetic disease called Alpha-1. I spoke to his parents about whether I should just post his photos to enjoy or if they would like me to write a bit about this disease. I, for one, had never heard of it until I met Kieran and I’m a strong believer that knowledge is power. His parents agreed, so let me tell you a little about it.
I won’t bog down in too many scientific details, but basically Alpha-1 affects the patient’s liver and/or lungs. A normal liver produces a protein (alpha-1 antitrypsin) that helps to keep the lungs healthy and functioning properly. In Kieran’s case, his liver was severely inflamed at birth, and after many days in the NICU and many diagnostic tests, his parents were given the diagnosis that will affect their day to day lives as they raise him. In cases such as Kieran’s a liver transplant is considered curative, but no one hopes to end up there, as you can imagine. Transplant patients have their own host of medical battles.
It is rare for Alpha-1 to be diagnosed in such a young infant – many carriers of this disease are not diagnosed until well into adulthood when severe damage to the lungs has already been done. In a way, it’s fortunate that Kieran was diagnosed so young, as his parents can modify his environment as much as possible to protect his lungs as he grows. They will avoid perfumes and scented candles, eschew wood-burning fireplaces, keep him away from other sick children even more vigilantly than most parents. We even joked that he won’t have to clean his own bathroom when he’s a teenager because the fumes are dangerous to him. It’s wonderful to me when people can laugh in the face of the major curveballs that life throws their way. The human spirit is strong. And so is Kieran! He is growing and thriving.
It was my honor to spend the day with this little fighter…
To learn more about Alpha 1, visit the Alpha 1 Association website here.
