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.

Emma Joyce has overcome the odds and a lot of challenges with this terminal epilepsy illnesses and she is now 5 years old!  You can meet her on YouTube and read more about her story here.

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.

 

 

 

4 thoughts on “Rare Form of Epilepsy Called Ohtahara Syndrome Causes Emma Joyce Severe Challenges”

  1. Shandi says:

    Love u Emma !!!

  2. Elena says:

    Эмма держись пожалуйста! Спасибо.

  3. jess says:

    My daughter has the same syndrome…can i know how is emma now??God bless her…

  4. Shoshana Rowland says:

    We just got Ro’s diagnosis in mid November. He has it from an ARX gene mutation. I have been looking everywhere trying to find anything! Everywhere and everything I have found seems to be a dead end with no reply so far.

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