Twin Genetics One Diagnosis

Raising Rare

No one wants a phone call from the nurse at their children’s school. In the fall of 2020, Megan received that call and was told that her daughter, who previously showed no symptoms, had a seizure and was being taken by ambulance to the hospital. After a whirlwind of tests and doctors and not being sure what any of it meant or what was going on, they finally received news. Megan’s daughter had 2 lesions that were 2 centimeters long pressing against her motor strip. They were told that this was genetic, meaning that due to her daughters being identical twins, they both had it.

After leaving that appointment she battled with how to tell her other daughter her new diagnosis but only a month later she started exhibiting symptoms as well and needed brain surgery as well. Megan quickly realized the importance of advocating for her daughters, but also made the choice to teach them how to manage, advocate, and speak for themselves within their treatment, a responsibility that not all 18 year olds (without a brain injury) are capable of.

Megan is a rare mama to two 18 year old daughters that have been diagnosed with Familial Cerebral Cavernous Malformation (FCCM), and a teenage son that is a freshman in High School. Listen to the episode to hear more about her journey, how she has handled the changes in her families life, and how her career has changed because of it.