Our New Identity: LGS

Emma's LGS Journey

Emma was a few weeks shy of her 17th birthday when she had her first seizure. It all started with 3 tonic-clonic seizures, and by the end of that week, she was having a myriad of seizure types.

Emma suffers from multiple seizure types, daily. The hardest part for our family has by far, been the drop attacks. Emma has typically 10-20 drops a day, frequently resulting in traumatic injuries including a fractured jaw.

It has been hard to accept her diagnosis. Typically children with LGS are diagnosed earlier in life. However, Emma is high functioning. It was not until the seizures began that we were referred for genetic testing. Afterwards she received her official diagnosis.

Diagnosed only 6 months ago, we are still learning to navigate our new lives. Emma requires 24 hour care now. We are fortunate to have a support group and extended family that helps with Emma’s care. We are also working with a team of Neurologists to hopefully gain some seizure control.

LGS has become our identity. Some of the best advise I can give to others in similar circumstances is to find a care team you trust and don’t forget to take care of yourself.