Emma Joyce was diagnosed with Ohtahara Syndrome at 4 months old. Ohtahara syndrome (OS), also known as Early Infantile Epileptic Encephalopathy with Burst-Suppression (EIEE), is a progressive epileptic encephalopathy. Kids like Emma Joyce who have the syndrome can have tonic spasms and partial seizures. It is an extremely debilitating progressive neurological disorder, involving intractable seizures and severe developmental delays. Some kids have as many as 100 seizures every day.
Kids with Ohtahara syndrome are often very floppy. They usually develop stiffness in their limbs – similar to children with cerebral palsy – which gives them severe impairments.
A lot of children born with Ohtahara Syndrome do not live past two years old so we are incredible happy for each day we have Emma Joyce in our lives.