Our son Mikey ‘Danger’ lives with HHE Syndrome – Hemiconvulsion Hemiplegia Epilepsy Syndrome.

In July 2017, ‘Danger’ underwent brain surgery to help with the intractable seizures that were continuing to damage his developing brain.

He had a functional hemispherectomy, whereby his left hemisphere was disconnected and now no longer communicates with the right hemisphere (and the rest of his body).

He is one of the rare people in this world who lives with ‘half a brain’.

He continues to amaze us with his fighting spirit and sheer resilience.

Read about his adventures here!

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HHE Syndrome – Rare Connect

Hello 🙂

If you have landed on this page, you are probably looking for information on an Epilepsy Condition called HHE Syndrome.

HHE Syndrome – otherwise known as Hemiconvulsion Hemiplegia Epilepsy Syndrome, is a rare epilepsy condition found in children.

There is not a great deal out there, and when we discovered our son had this condition we set up a Patient Connect page through Rare Connect Eurodis, to help others connect and find out more to help our kids live their lives to the fullest.

There is also brain surgery – a radical brain procedure that disconnects the 2 hemispheres.   We are about to go down this path with our son…. watch this space.

We aren’t the first family to encounter this, and we certainly won’t be the last!

I believe there is a brighter future for our kids that live with this condition and by sharing our stories, is a crucial step in spreading awareness and hope for these little champs.

To read more about this condition and patient stories, please visit Rare Connect HHE

Continue reading “HHE Syndrome – Rare Connect”

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