What are the chances, that you will find someone who is walking down a very similar path to you, at the exact same time as you are? Facing fears, deliberating on issues that to other people, don’t even enter their minds as the rarity of the situation is so extreme that you even struggle to comprehend it? What are the chances that you will actually find another person, where amongst the madness, you can share similar fears, worries and most importantly, your hope!
Well, stranger things can happen and for us, this did happen!
Last October, Bryce and MrD flew to Melbourne for a week long hospital EEG. A mum had reached out to me via the HHE Rare Connect webpage. Her name is Jenny and her son is Win. They are based in Melbourne and we are based on the Gold Coast. Two different cities, two unique boys both with the same rare form of epilepsy – HHE Syndrome.
Jenny met Bryce and Mikey during his EEG. It’s a small world with rare epilepsy syndromes, Jenny was there for a neuro review with the same doctor that was reviewing MrD. They briefly discussed many things in that short space of time. They parted ways and Jenny and I kept in touch.
As the months went on, Jenny told me of all the things they had tried with their son, as I told her what we had tried with our son. The only difference between Mikey and Win, was their age – 5 years old and 9 years old, respectively. Both right-sided hemiplegia. Both cheeky chappies, both hard workers with their therapies over the years, both fighters and both loved by all that crossed paths with them.
Jenny told me that they had been given the news roughly the same time that we had our news. We both knew that our sons had intractable epilepsy, but late last year we were both told our sons needed radical brain surgery called a hemispherectomy. There were no more waiting periods, what-if’s and what may’s.
Win is booked in for the second half of the year, as is MrD also – confirmation soon to come – we are both waiting on the dates!
Both of us as mums have found a connection through a very unlikely and unfathomable set of events, but here we are, about to take the leap of faith that our doctors are guiding us on. We are both fortunate to have partners that are here with us too. Both sharing this roller coaster ride with us, along with our boys’ siblings.
What are the chances??!