In 2013, our son Michael ‘Mikey Danger’ was diagnosed with Hemi-convulsion Hemiplegia Epilepsy Syndrome (HHE). This is a rare brain disorder.
Despite being premature with his twin sister Jasmine, Mikey was a healthy baby until he suffered a febrile illness at 10 months of age. He was misdiagnosed as having a stroke, as he presented with paralysis on the right side of his body. He regained some of his strength and movement in his leg within a few days of being in hospital but his arm remained unable to be used. He suffered many seizures while in hospital, after which MRI’s showed significant atrophy of his left hemisphere and as a result, now also lives with Cerebral Palsy.
Michael remained in hospital for weeks, whereby his seizures were finally controlled by medications. This seizure-free period lasted for eight months, but then he started having drop seizures, the same time we found out Jasmine needed to undergo open-heart surgery. As Jasmine was recovering, Mikey’s seizures became worse, he suffered up to 10 - 20 drop seizures a day – resulting in a brusied little body. He wore a headbumper to protect him and even going to the park was a risky activity. After his medication was reviewed the seizures slowed down to only having an occasional absence seizure. He now regularly sees a neurologist for EEG’s to determine what activity is occurring in is left hemisphere, currently the right hemisphere remains untouched and not involved with any seizure activity. Mikey has received great support from multiple therapists to help him develop physically, emotionally and intellectually.
Mikey is now four, and we have seen such a determined, little boy come through, with a great deal of strength, that we, as his parents, draw on. Not much is known about this rare syndrome, and the outcome of having this disease, is a ‘wait and see’ process, like so many others who are faced with the uncertainty of their rare diagnosis. As a family, we have struggled to find anyone in Australia with HHE. It’s a constant maze of enquiries and research, along with a great team of neurologists and allied health professionals who support and assist Mikey to help him reach his full potential.
Since writing this story another family has been located in Australia with a member of the family presenting with this rare disease.