What is primary immunodeficiency?
Primary immunodeficiency (PI) diseases are a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. While not contagious, these conditions are caused by hereditary or genetic defects and can affect anyone, regardless of age, gender, or outside factors. While each different disease can vary in symptoms and severity, they all share one common feature—each results from a defect in one of the body's normal immune system functions.
|
Charlotte's Journey
The Yellow Bear Foundation was formed in 2017 by the Lavin family when their daughter, Charlotte “Bear” Lavin, was diagnosed with Specific Antibody Deficiency (SAD) with normal IgG at 4-years-old. It took Charlotte and her parents four long years before receiving this diagnosis. It first began when Charlotte was just a couple of months old, she contracted pneumonia, which can be life threatening for a young baby.
|
By the age of one, she had multiple illnesses (including pneumonia twice), but her doctors called it “just kid stuff.” They tried every medical option presented to them—from blood work and EGDs to dietary changes, prophylactic antibiotics, and steroids. It was very daunting as new parents because they wanted to help their daughter, but nothing helped make Charlotte get well or stay healthy.
The Lavins were not going to give up their fight for Charlotte until they had answers. They decided to seek other opinions and met with the team at OSF Healthcare Children’s Hospital of Illinois Pediatrics and Pulmonology team. OSF immediately realized it was more than “just kid stuff” and referred the Lavins to a pediatric immunologist at Lurie Children’s Hospital of Chicago. This is when they began to see the light, as Charlotte received her first proper diagnosis: Specific Antibody Deficiency. After failing her second round of prophylactic antibiotics, her medical team started her on IVIg, a therapy that can help people with weakened immune systems or other diseases fight off infections. |
With the help of her diagnosis, Charlotte went from a fragile, unwell and exhausted little girl to being full of energy, thriving and enjoying life: cheering and attending school with her friends. Remarkably, she has needed very few antibiotics or steroids since the beginning of IVIg, though she does still need regular infusions. Through this journey, the Lavins have become connected with the Immune Deficiency Foundation (IDF) and other organizations and wanted to contribute to raise awareness about PI and the more than 300 rare, chronic disorders that can come with it.
Please help kids like Charlotte fight their battle by donating to the Yellow Bear Foundation to fund research and spreading awareness for PI. We believe that together we can create a brighter tomorrow by improving the diagnosis, treatment and quality of life for people with PI. |
What is the significance of yellow bear?
The Yellow Bear Foundation is a nonprofit organization established to raise awareness and fund research of Primary Immunodeficiency (PI). Our mission is to increase the ability and education for diagnosis and the accessibility of treatment in the Central Illinois area and beyond.
For the Lavin Family, the name Yellow Bear came easily and from the heart, as their daughter Charlotte’s nickname is “Bear” and her favorite color is yellow. It perfectly represents the purpose of the foundation. |
|