22nd-29th April 2024

Jill Heilman

I have three amazing children, Halle (forever 15), Neeley (17), and Ben (15), all diagnosed with primary immunodeficency. We began this journey when our oldest daughter, Halle, was diagnosed at 2 years of age. Many doctors overlooked the chronic infections and hospital stays in her early years. It wasn’t until she was 2 when she was admitted for another infection when I insisted her immune system be tested. It was in October 2002, that we received the diagnosis of hypogammaglobulinemia and began a path I never imagined. The past 19 years have produced some amazing joys and celebrations in our family but also gave us the most life shattering loss. Halle’s body succumbed to complications with her immune system at the age of 15. We miss Halle fiercely, but continue to live each day to the fullest as she has taught us to do. Neeley and Ben were diagnosed at 12 years of age and 8 months of age resepectively. They have learned to endure weekly infusions and numerous doctors appointments and procedures. Despite the medical challenges the face, they are outstanding human beings who are excelling in school, athletics, friendships and so much more. They have had to spend the past year in cautious isolation as they are e-learning and hanging out with friends either virtual (for Ben) or in safe settings (Neeley). We are thrilled the covid vaccine has become available to Neeley and we are hopeful access for Ben will come soon. Our lives didn’t change too much during the pandemic, as we have spent the past 19 years living a life hyper-aware of the impact infections can have on our daily life. It is my hope Ben and Neeley will live in a world with more progressions in science and in treatment for their conditions. And also hope they live in a world that becomes more accepting for those dealing with chronic medical conditions.

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