Unlocking the Mysteries

by Mel Rush on 02/22/12

It was just over two years ago that the word Polymicrogyria came hurtling into my life.  In February of 2010 I was 32 weeks pregnant.  My husband and I were expecting our second son mid-March.  My first pregnancy was a breeze…nothing unusual, no red flags.  This was not the case with Luke.
At our 20 week ultrasound, Luke’s head was measuring very, very large.  Several specialists and ultrasounds later no one could find a cause for his ever increasing head size.  A perinatologist at our local hospital referred us to our Children’s hospital to have an MRI to see if they could find any answers.  They were pretty confident that my kid just had a really big head.
I had the MRI done and got ‘The Call’ that same afternoon.  My son had a condition that even this experienced perninatologist at a great hospital hadn’t really heard of – bilateral frontoparietal polymicrogyria.  My husband and I were both on the phone.  I’ll never forget anything about those moments.  I was able to write down an almost correct spelling and while the rest was kind of a haze – it is all still very clear in my mind…moderate to severe mental retardation, moderate to severe developmental delays, seizures, eating problems and more….these words would swim around my head for the coming weeks.  Really, they still do.
We got home and got to work.  Well, we tried to.  We sat in front of the computer and searched polymicrogyria, bilateral frontoparietal polymicrogyria, etc.  Nothing.  Well, nothing we understood.  We found research studies – sad, sad research studies.  It was disheartening.  There wasn’t much out there and there certainly wasn’t anywhere to find information that was easy to read, easy to understand and helpful.
So I started my own blog.  I wanted to meet other people who were going through this.  I wanted to find people who could reassure me that things were going to be ok.  I needed people who were living PMG to tell me (NOT A DOCTOR) what we might expect to happen.  I have met some really special people who are in the same choppy waters as we are and who have been an amazing support system.
One of those people I met was Catrina.  Her sweet granddaughter, Brie, was diagnosed with PMG at three weeks old.   She recently e-mailed me and started out with ‘You’re going to think I’m crazy.’  She proceeded to tell me this idea that she and her daughter, Brandy, had to start a website compiling all the information that we could find about PMG including websites, blogs, photos of children/families affected by PMG, support group information, advocacy, and much more. Crazy?  No.  Brilliant?  Yes!!  What I would’ve given to have this kind of information at my fingertips when I googled polymicrogyria two years ago!  I jumped at the chance to help with this amazing project!
And now to the blog part…we want to feature a family every month.  It would be nice to have a place where people can share their stories about getting diagnosed with PMG, their triumphs, their struggles – really, just their story.  Having these stories would be helpful to people who are searching for information about their child’s diagnosis.  We will be able to educate each other on traditional and nontraditional therapies we have tried, medicines that have worked or not worked, doctors that have been effective, technology or other equipment that has helped our children and more.  Please let me know if you are interested in having your family’s story shared.  It won’t be too much work!  I promise!  You can e-mail me at mel@pmgawareness.org.
For me, my little one is almost two.  With the help of many, many others and lots of work, I’ve found out more about PMG and a lot of the different ways it can affect Luke.  Those same people along with our family and friends have shown me that it is all going to be ok.  With easy to find information about Polymicrogyria and support of others, it becomes easier to handle.  We hope that this website will make it easier for all of us to unlock the mysteries of PMG.
Mel Rush