Charlotte Farano

I'm fundraising for our beautiful child lijie and all the others going through similar situations.

Our child lijie was born with a rare genetic syndrome - 1p36 deletion syndrome.  As a result Lijie also has developmental and epileptic encephalopathy.  Over the years we have tried numerous medications however have never been able to gain complete seizure control.  Lijie's seizures are life threatening and result in multiple emergency admissions every year.  The epilepsy foundation has helped us throughout the years with ongoing guidance and training to support Lijie.  We are very grateful for their ongoing support x