Lillian, who goes by Lillie, was diagnosed with Lyme disease at 19 months old. A strange insect bite appeared on vacation that resulted in a full-body rash and a 104-degree fever that lasted for days. After scouring the internet, Lillian’s mother, Meredith, found a Lyme-literate Medical Doctor (LLMD) and drove 14 hours to her first appointment. The LLMD ordered testing and confirmed the Lyme diagnosis. However, the tests also revealed that Lillie was not recently infected with Lyme as she had antibodies in her system for some time. The doctor explained that Meredith likely had Lyme disease and that Lillie contracted it during pregnancy. The news caused Meredith to reflect on and reevaluate her own two-decade struggle with her health. When they found The LymeLight Foundation, Meredith was a single mom and her daughter’s sole caregiver, raising Lillie on a modest income. While they received some help from Lillie’s grandmother, they couldn’t afford the expensive out-of-pocket doctor visits, testing, and medicine required to stay on top of treatment. Lillie was struggling with frequent infections, neurological complications, and insomnia—among many other symptoms. A LymeLight grant helped them afford Lillie’s appointments, testing, and treatments necessary to uncover co-infections and get her to a healthier and calmer place. Since receiving the LymeLight grant for Lillie, Meredith has been diagnosed and started to address her own Lyme and co-infection diagnosis. Today, Lillie is a happy, energetic, and outgoing 8-year-old who loves to read, ride horses, kayak, dance, and sing. Meredith and Lillie share a love of horses and believe in the healing power of equine therapy. Their journey with Lyme is far from over, both Lillie and Meredith still struggle with daily symptoms—which may never go away. Yet they choose to focus on staying positive and trying to be as active as possible. Like most people battling chronic Lyme Disease, they have good and bad days—something Meredith has written about in her first children’s book, Moon Child Rising, which is expected to be released in April 2023. The book explores the cycle of feeling the effects of Lyme over the course of a month. This writing experience has inspired Meredith to develop a companion book for parents and adults.
Meredith and Lillie – Chicago, IL
Congenital Lyme Stories
- Families Facing Congenital Lyme Disease
- Diagnostic Challenges
- A Call to Action
- Melissa and Levi – Orangevale, CA
- Angie, Marley, Kai, and Leila – Santa Cruz, CA
- Meredith and Lillie – Chicago, IL
- Kali and Otis – Woodbury, VT
- Ashley, Ron, Kaiya, and Jameson – Santa Barbara, CA
- Kelley and Ethan – Hopkinton, NH
- Amy and Juneau – Apollo, PA
- Krystle, Thomas, Alivia, and Easton – Rockford, IL