February Post for Rare Disease Day!

27655046_2084354794914319_7518656112282901298_nThis week we received the long-awaited news at Mikey Danger’s hemispherectomy post-op check-up – 7 months to the day, that we’ve been longing to here…..

You no longer need to see me –  come again in 12 months!

These were the words from our neurologist who we have been in a close relationship with for the best part of 5 years.

He has answered every question we have had via email, phone call, skype call and face to face consult. He has guided us through the most difficult decision of our life – to make the decision to disconnect our son’s 2 hemispheres for the hope of a better quality of life for him.

He was suffering seizures every single day since the age of 10months and each of his EEG’s during these 5 years, showed as abnormal.  Every medication he tried, would be short lived until another break-through of cluster seizures would inevitably lead him to an increase in dosage.  An increase in dosage that had serious side-affects for him.  Limited speech, cognitive regression, behavioural difficulties, sleep difficulties.

It is quite surreal when I speak of this experience now, I almost feel as if I’m talking about someone else.  And yet, from time to time, the anxiety of those days, creeps up on me and squeezes my heart like nothing else can do!  Fortunately for Mikey Danger he was a successful candidate for surgery due to the type of rare syndrome he had – HHE Syndrome (hemi-convulsion hemi-plegia epilepsy syndrome).

His strength was lost shortly after he had learned to crawl at 10months but was replaced with the strength of commando crawling, followed by bum shuffling, pulling himself up and eventually, walking with a limp.

All of these stages were huge at the time, and we celebrated them fiercely!  His loss of speech followed by a resurgence  8 months later after the initial seizure to his brain, and then single words slowly but surely followed.

As time ticked on, as it inevitably does, we saw some changes that were positive and others not so.  The to-ing and fro-ing of the decision making process weighed up on many factors, but one that would ultimately lead us to surgery which happened on 26 July 2017, exactly 2 months prior to his 6th birthday.

We were making a decision opting this surgical procedure, rather than waiting anymore in case a seizure were to take his life.  His risk was high as the odds were stacked against him.

This week for rare disease day, unlike previous years, we are all slightly more relaxed!

With an outcome that we could have only dreamed of, our little Danger Boy is thriving.  Living a life seizure free surrounded by people who only want the best for him, we count our lucky stars that he is able to go forward every step of each day, fearless like the little Danger Boy that he is!

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