Gwen’s Story

Gwen is a sweet and sassy 3.5-year-old little girl who has the greatest belly laugh you’ll ever hear. Her journey with health complications began when she wasn’t even a month old. For more than four months, Gwen was seen by many different specialists at another hospital without answers. Finally, Gwen’s parents, Erin and Mark were referred to St. Louis Children’s Hospital.

Gwen’s family is so thankful for Children’s. Their experience was like night and day. Almost immediately, Gwen had a brain MRI and was referred to Neurology. Soon after, she was referred to Dr. Liu Lin Thio. To this day, Gwen still has no clear diagnosis, but her doctors know she has epilepsy, a brain disease, and microcephaly, a condition that causes a baby’s head to be small and not fully developed, which stops the brain from growing as it should. Sadly, she continues to regress and lose function as she grows. However, thanks to Dr. Thio and his team, the family has more answers than they ever had before and Gwen’s quality of life has significantly improved.

Of the many hurdles the Kramer family has had to face, one of the toughest was handling Gwen’s daily seizures. She was put on the Ketogenic diet which reduced her seizures from nearly 200 a day to an astounding 10-15. Still, most of Gwen’s seizures were occurring overnight and Erin and Mark continued to switch off nights where they would not sleep in order to care for Gwen.

Thanks to Dr. Thio, the Kramer family was awarded grant funding from the June Jessee Memorial Foundation Fund at St. Louis Children’s Hospital and have been able to hire a night nurse for nine days. This grant allows Erin and Mark a chance to sleep on the nights the night nurse is on duty. Since that award, the Kramers have developed a wonderful friendship with the Jessee family.

Although Gwen continues to have a consistent schedule of doctor appointments, her mom can’t say enough about her spirits. Gwen loves sunshine, swinging in her backyard, going for walks and listening to music. Erin says, “Gwen is a happy little girl who is continuously able to touch the lives of everyone she meets.”