CVID is an immune system disorder that causes low levels of antibodies in the blood that help to fight infections. Joyanna has battled frequent, often severe, infections that typically develop in her ears, sinuses and respiratory system and require hospitalization. To prevent infections and strengthen her immune system, Joyanna must receive a monthly infusion for the rest of her life. The Child & Family Support Services team works closely with Joyanna during her infusions, given her fear of needles. At Connecticut Children’s, she relies on nurses and the Child & Family Support Services team to help calm her while she receives the lifesaving care she needs.
In addition to CVID, Joyanna was also diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES). FPIES is a rare food allergy that affects the gastrointestinal system. Joyanna is severely allergic to a number of foods and must carry an epi-pen at all times. She is also allergic to dogs. Additionally, Joyanna has a gastrostomy tube (g-tube), surgically inserted through her belly button directly into her stomach. Joyanna receives formula and medications through her g-tube, ensuring she receives the proper nutrition and medications each day.
Joyanna has also been diagnosed with Mastocytosis, a condition that causes abnormal growth of certain immune cells, called mast cells. Mast cells are responsible for protecting the body from infection and releasing chemicals to create an inflammatory response in the body. They build up under the skin and/or on internal organs and bones. Mastocytosis can cause a number of symptoms, ranging from bumps on the skin to gastrointestinal issues and can increase the risk of anaphylaxis.
Please join us in celebrating Joyanna’s determination, will to live and genuine joy. She is an inspiration to all and a reminder that anything is possible.