Lucia was a perfectly happy and healthy baby girl, hitting all her milestones and developing well. Her life, and ours, changed in a heart beat one evening when she was nine months old. Whilst getting ready for a bath Lucia flopped backwards and had a seizure. The seizure would not stop, she was stabilised at home by paramedics and taken to the resuscitation unit at A&E where they managed to stop the seizure. She was transferred to PICU for four days where she underwent further tests.
This was our introduction to SCN1A related epilepsy. A rare and often drug resistant form of epilepsy. Lucia has had many seizures, all triggered by an increase in temperature caused by teething, a virus or a hot, sunny day. They often result in paramedics being called and hospital stays. Lucia is on daily medication and sometimes needs emergency medication to stop the seizures. The emergency medication stops the seizures, but can also have other side effects like breathing difficulties, which happened to Lucia last year when she stopped breathing. Thanks to the care team at her nursery and paramedics she is still here.
Lucia’s seizures have impacted in many ways including gross motor skills deficiency, which means she cannot walk far and speech delay, both of which have caused other learning issues.
Lucia is a brave and amazing little girl who teaches us every day how awesome she is and how lucky we are to have her.