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My Message for the Next Person Who Googles ‘Vici Syndrome’

My youngest brother, Timmy, was less than a year old when he was diagnosed with three degenerative conditions: agenesis of the corpus callosum, optic nerve hypoplasia and mitochondrial myopathy. Having a brother with special needs isn’t easy, but it’s something I learned to live with and something my family simply had to adapt to.

We had to work our schedules around Timmy’s appointments, tests and therapies. Our priorities changed. We had to learn how to stay strong. There are hard days and there are good days, but it’s always a challenge. And it’s a challenge my family faces together.

In early summer 2016, when Timmy was 7 years old, we were told that his condition was showing signs of being static. These signs were confirmed after further studies of Timmy’s test results. This was good news, since it meant that Timmy’s condition wasn’t progressing (getting worse) as fast as they’d predicted. I, of course, was happy to hear that I’d have more time with my brother.

In July 2016, we were given a new diagnosis for Timmy: a rare and severe disease called Vici syndrome. Vici syndrome replaced the former diagnosis of mitochondrial myopathy, and it also meant Timmy’s condition was more progressive than before. And just like that, the relief we’d had over his condition being static, the feeling that maybe life was going to slow down and give Timmy a bit of a break, had vanished.

Despite the fact that I knew Googling “Vici syndrome” was probably not the best idea, I did it anyway. 

Recessively inherited disease.

Extremely rare. 

Fifty documented cases worldwide.

Life expectancy: three to eight years.

It felt like I was underwater. I felt hopeless — more hopeless than I usually did when it came to Timmy’s condition. I felt restless, like I should be doing something other than go on with my life. I felt lonely because this wasn’t something that was easy to talk about, nor was it something I felt like explaining. I felt scared for what the future held for Timmy. And I felt angry — for lack of a better word — because the chances someone having Vici syndrome were so slim. This was my baby brother, and it just wasn’t fair.

In an effort to make myself feel a little better, a little more hopeful and a little less lonely, I turned to The Mighty. Reading stories of people who have had similar experiences comforted me when it came to Timmy’s other diagnoses as well as my own anxiety.

But there weren’t any stories about Vici syndrome. This only made me feel more alone.

Now, I’ve had some time to let it sink in. My family stuck together, we adapted, we discussed, we laughed and we pulled through, just like we always have and always will.

And as time goes on, there will be more people who will be diagnosed with Vici syndrome. There will be more parents that get the same phone call and are emailed the same research paper. There will be more siblings who will have to go through the same thing that I did.

And that’s why I’m writing this: So that the next person who Googles “Vici syndrome” gets at least one result telling them they’re not alone.

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