No one can truly prepare for life raising a child who has a rare disease. But as exhausting as it can be, Lori Dunham describes that raising her little girl Grace who has Lambert-Eaton myasthenic syndrome (LEMS) has also been more rewarding than she could have ever imagined.

Grace’s Story

Grace’s family didn’t see any warning signs that she may be facing a rare condition before her diagnosis. Grace was just suddenly unwell.

You can read the full story of Grace’s journey to diagnosis here. Her mother also describes the grieving process she went through. Grace was losing skills, and experiencing decreased ability and mobility.

Grace has now been living with a LEMS diagnosis for 2 years, and some of these skills are now being restored. Her family celebrates every new achievement and victory. They explain how important it is to celebrate each step forward in Grace’s journey.

Grace has been incredibly resilient and has demonstrated mental tenacity. She has worked to get her learner’s permit despite doubts that her leg strength would be enough to handle driving a car.

Grace worked hard through physical therapy, and built up the strength necessary to safely operate a vehicle. She was determined and she made it happen. Her mother could see the pride on her face when she left the DMV. It not only showed her determination, but it also demonstrated her ability to lead an independent life.

The family went out to celebrate, eat ice cream, and then get to practicing in an empty parking lot.

Lori explains how influential hope has been in the process. Hope is what allowed the family to navigate the hard times. She emphasizes how important it is to also celebrate every achievement. Celebrating and remembering the victories are what has helped this family navigate life with LEMS.

You read more about Grace’s story here.