Finnegan had a very difficult and tumultuous beginning of life, struggling for his first breath, and fighting to survive with every ounce of his being. Finnegan was born at 28 weeks gestation weighing a mere 2 pounds and 6 ounces, or approximately the size of an eggplant.
Prematurity alone comes with a list of health and developmental problems, the most immediate and serious of which is immature and incomplete lung development, which leads to a lifetime of difficulty breathing. Finnegan has chronic lung disease, asthma, and has been frequently ill with respiratory infections since he was born. He has seen a pulmonologist all his life, as well as multiple visits to doctors, urgent cares, and emergency rooms for respiratory infections that always seemed to go straight from a sniffle into pneumonia. We always thought the respiratory struggles were due to lung scarring, asthma and ventilation from his immaturity known, as BPD (Bronchopulmonary dysplasia).
Recently, Finnegan’s pulmonologist became concerned that he was not outgrowing some of the respiratory difficulties as many prematurely born children do and referred him to an immunologist. In April of 2019, we met with an immunologist along with a team of physicians at St Louis Children’s hospital who gathered a thorough history and ran a barrage of tests to determine why Finnegan was so sick so often. The results came back and showed that in addition to the struggles of being born premature, Finnegan also was born with a deficient immune system. His results showed almost no IgG (which is accounts for most of the antibodies of the immune system) and IgM (which accounts for a large portion of the rest of the antibodies). That means Finnegan has almost no ability to fight off infections from bacteria or viruses. Finnegan has lost his immunity to illnesses he had been vaccinated against, and in some cases like pneumonia, he is completely unable to form immunity to specific pathogens we thought he was protected from by vaccination. He was diagnosed with Primary Immunodeficiency.
Primary Immunodeficiency is a failure of the organs and cells of the immune system to function. Immune system organs and cells are all over the body. The liver, bone marrow, tonsils, lymphatic system, spleen, the circulating blood, and even the appendix all have a role in protecting the body from invasion. IgG and IgM are the primary means by which the body fights infection and promote the memory of prior infections which improves the fight with each subsequent exposure. It’s like training and drilling the soldiers in an army with tools and tactics to go into battle properly prepared, to attack quickly and effectively. Finnegan, however, has only a few poorly trained soldiers with limited tools and they forget everything they learned in between exposures. Each time he is exposed to bacteria, viruses, parasites, allergens, and toxins, his immune system has no memory of the threat they present to his body. He gets very sick, very quickly as those few soldiers he has are taken by surprise and overwhelmed.
Finnegan will need infusions every week to provide him with the antibodies he needs in order to have the protection from pathogens, allergens, and even cancer. The immune system is also responsible for eliminating the strangely behaving body cells of cancer. IgG and IgM produced in the body of another person will be given to Finnegan for him to be protected from life threatening infections and disease states. It is not a cure. He will require these infusions for years and possibly for the rest of his life in order to stay protected.
We don’t have the whole picture yet. This immune deficiency is genetic, and more testing will need to be done on our family members to determine the genetic extent of the deficiency and to help determine if Finnegan will need these infusions for the rest of his life. The infusions themselves are astronomically expensive. Combined with the cost of genetic testing, missed hours at work, and travel expenses, the cost of providing protection for Finnegan is overwhelming. We are in desperate need of help with the uphill battle that will start with his first infusion at the first of June 2019.
We have started the Finn Fighters as a source of support and encouragement as Finnegan begins yet another battle to live. Your donations will help to bridge the gaps in which there is no insurance coverage. They will help us get him to and from his appointments, complete the genetic testing that is not covered at all for myself and my husband, help with copays, help cover lost wages, and allow us to modify Finnegan’s environment to keep him safe. Each donation of $25 will receive an awesome Finn Fighters T-shirt and our eternal gratitude for helping us to allow Finnegan to keep up the good fight.
Every infusion takes several months to develop and the plasma of several donors to create. There is a nationwide shortage of this lifesaving treatment. Please consider blood and plasma donation for the benefit of all children needing help with immune supplementation.
We thank you with all our love, as we continue the journey with our determined and sweet Finn, who has touched so many at such a young age. He is not the life of the party. Finn is THE party!
Zach, Ashley, Sterling, and Finn