Prelude to Other Faces of PVNH

Since I learned of the diagnosis last October...
My mind has been in overdrive...
Overdrive to the 100th power actually...

It already had been in my ongoing research...
Since that one disease had been mentioned...
When Ella was hospitalized for the second time...
A year prior...

And so I went on...
Reading every paper I could find...
Every abstract...

Posting testimonials on web sites...
Researching late at night...
Sometimes all day...
Contacting rare organizations around the world...

But none of those efforts for answers...
Really brought me comfort...
On the other hand, they generally...
Got me even more frustrated...

That medicine...
As amazing as it is...
Has so many limitations...

When it comes to the identifying...
Managing...
And curing rare diseases...

So I took matters in my own hands...

Yes, I know...
I have control issues...

But sometimes, these types of unhealthy behaviours...
Actually are needed to move forward...

And then, it happened...
Out of blue...
I found a post...
From a mom speaking about her son living with PVNH...

In a moment of clarity...
I thought maybe?...
Maybe I can find her...

And I did...

I sent her a quick note...
Told her Ella's story...
And asked her if she would...
Share her own experience...

She immediately sent back an email...
To say sorry for my loss, and thank you...
To offer her family's story...
With regards to PVNH...

From the other side of the world...
And, as if offered as a gift from Heaven...
Came the news that she knew...
Several other PVNH families too...

And then I thought...
If I can't control the lack of information out there...
I can definitely impact what the useful information can be...
When it comes to PVNH...

Out of my personal dysfunction...
Came a Facebook group...
X-Linked Periventricular Heterotopia (PVNH)...

A group?...
Not really, it was just me & Ella...
Or so I thought...

But quickly there was one...
And then two...

By Christmas...
As many as 9 families had joined...
Because they knew...
As I did...
That Ella & I were not alone...
And that we would never be again...

In the next few days...
I will introduce to you...
To the other faces of PVNH...

The ones that help me keep my chin up...
And my faith unwaivered...

That one day...
One day, we will know...

How to better diagnose...
Manage the symptoms...
And hopefully cure PVNH...

ELLA - Everynone Loves Little Angels