Jacks Family Fair is a fundraiser hosted by Access 1st Capital Bank to benefit the Jacks Foundation and American Red Cross. Please join us at the bank on Saturday May 1st from 10am – 1pm. Admission is free and there will be live music, food, games, prizes, a raffle, a blood and bone marrow drive.
Jackson’s Story:
Looking back, 8-year-old Jackson Jernigan’s parents, Emily and Jonah, could not have guessed how much their lives would change in a day’s time. Jackson was born a perfectly healthy, full-term baby in January of 2002. In August of that year, after returning from a family vacation, Jackson became very ill. He began running high fevers, had labored breathing, loss of appetite, and was very lethargic. After he was taken to a local emergency room he was admitted to the nearest children’s hospital where he was treated for pneumonia. His two week stay in the ICU was one of the most emotionally trying times his parents had ever experienced. They were told by the ICU doctors that they had never seen such a quickly progressing lung infection in a child as they saw in Jackson. After Jackson struggled for 19 days to fight off the near fatal virus, he was finally released to go home with a continuous oxygen supply and medication.
Once home, Jackson was referred to specialists to follow up on his hospital stay. Soon he was no longer required to continue the oxygen or medications. Life returned to normal. Unfortunately the comfort of that normal life was short-lived. Over the next 3 years, Jackson had a series of recurring infections including pneumonia, ear infections, skin abscesses, mouth ulcers, and thrush. He was in the doctor’s office every week; sometimes multiple times a week and hospitalized during that 3 year time frame. He was treated with antibiotics and other standard treatments for common childhood illnesses. All the while neither his parents nor his physicians realized that his continued poor health stemmed from a much bigger issue. It was finally determined that there may be an underlying cause of the multitude of persistent infections. Jackson was then admitted to the children’s hospital for further testing. The news that Jackson’s parents were about to receive would alter the course of their lives. He was given a preliminary diagnosis of Hyper IgM Syndrome. Hyper IgM Syndrome is a genetic disorder that causes primary immunodeficiencies resulting in an overproduction of IgM antibodies and an underproduction of all other types. Jackson’s case is unique because his particular genetic defect is the only one known in a patient with Hyper IGM. Due to the lack of production of specific antibodies Jackson has a higher than normal susceptibility to various types of infection. Although finally hearing the diagnosis was a relief, it also meant a new set of challenges for the foreseeable future.
Once diagnosed, Jackson was placed on a treatment plan that allows him to maintain a better quality of life. To keep infections under control his treatment plan includes intravenous immunoglobulin infusions every 3 weeks to provide him with the antibodies he doesn’t produce on his own. He also receives weekly injections to increase his white blood cell count, and takes oral antibiotics multiple days a week to prevent lung infection. Hyper IgM is a lifelong diagnosis. Recommended treatment plans must be followed precisely and are modified as needed in order to maintain the best possible health. Although treatment with IVIG and antibiotics has reduced the frequency of potentially fatal infections, the prognosis is still poor. Malignancy and liver complications are two of the greatest risk factors for a patient living with Hyper IgM Syndrome. A Bone Marrow Transplant (BMT) was one course of action recommended for Jackson. It is vital that the transplant take place while Jackson is in good health and prior to any new infection, malignancy, or liver complication. The family was recently informed that there is a suitable donor available through the National Bone Marrow Registry. After receiving this news and due to the fact that Jackson’s treatment plan is currently effective, it has been decided that he will undergo a BMT early this summer. Hopes are that this procedure will be the answer to permanently relieving Jackson of his illness.
In honor of Jackson’s experience and touching story a foundation is being organized in his name. Jacks Foundation is a non-profit corporation dedicated to the early diagnosis and promotion of public awareness of primary immunodeficiency diseases through education, research, advocacy, and resources.