Finley was born normally, but very late, at 42 weeks. He was a healthy 8lbs and 4ozs. He had severe reflux and needed medication from birth. He didn’t gain weight easily because of this.

By the age of 3, he still wasn’t talking so he had some speech therapy. He seemed to go from no speech to chatting in away in no time at all. We thought it was all normal.

At the age of 5, Finley started to have seizures. They happened frequently and his EEG showed a startling amount of abnormal activity. He was drooling constantly and in and out of focal seizures for days at a time. He was prescribed keppra and buccolam as the tonic clonic seizures lasted around 30-40 minutes.

We tried multiple medications and eventually they settled. Then one morning he woke up slurring his words like a drunk person and having episodes of extreme violence, often throwing furniture around at school. He was referred for an emergency overnight EEG. He was then diagnosed with ESES. He was prescribed clobozam and we started a regime of high dose prednisolone.
He gained lots of weight very quickly. His SWI went from 88% down to zero and he started to regain skills that he’d lost.

We did the genetic testing and although this initially didn’t show anything, after they discovered GRIN2A abnormalities on my husbands, they looked at Finley’s again and discovered he had the same abnormality. We have since linked some of his other struggles to this condition.

He’s a happy boy who is passionate about football and WWE, he has a wicked sense of humour and is so friendly and loving.