As a new grandmother of a precious baby girl, my mind and heart were filled with hopes and dreams for our new princess. Just as every family does, we thought about what she might be when she grows up, what extracurricular activities she might like, will she be girly or a tomboy? You all know what I mean. It’s the dreams and hopes of every parent and grandparent. It’s all a big part of the mystery of a new child. The potential to be whatever they wish exists and it’s exhilarating to think of all the possibilities for this new creation. But when the unthinkable happens and suddenly find yourself in the middle of a nightmare of not knowing anything, everything changes.
Perhaps you don’t even know what is wrong with your child initially. Maybe you can’t quite put your finger on it. But you know something just isn’t quite right. Or maybe the signs are much more obvious. Maybe just the trying to find out WHAT is wrong seems to be a never ending battle. But, for the families and friends and individuals affected by Polymicrogyria (PMG) finding out the diagnosis is hardly even a drop in the bucket compared to the “where do we go from here?” Compounded by the fact that for every single person it affects each one differently. There is a whole lot of “gray” inside this diagnosis. And as for me, it is one of the hardest things to deal with.
The sad truth of the situation (and as an RN with over 21 years of nursing behind me) frequently health care providers want to lump special needs children together as, more or less, a lost cause. It is very common that they will push to have tubes inserted (or perhaps even more drastic procedures) based on what their view of the POTENTIAL quality of life is for your child. In an age of drastically reduced medical budgets, doctors often want to save the resources for children “who have the best chances”. As a matter of fact, had we listened to the initial squawkings of the medical team at Wolfson Children’s Hospital here in Jacksonville, Florida, Brie would not only have a g-tube but also a Nissen procedure and a tracheostomy! The latter two were definitely not necessary but it was only at our insistence that we wait and be sure that she actually needed these procedures, that she only has a g-tube as of this date and is doing astoundingly well.
But, I digress. What I wanted to say is that the lack of information and resources for those affected by PMG is appallingly scarce. I have spent the greater part of the past 6 months digging for any shred of information. Thank God we have the internet! I simply cannot imagine what it would be like without the amazing encouragement of my friends on FaceBook PMG and YahooPMG sites. (The links can be found on our Resources page).
As a direct result of our feelings of powerlessness over this disease that is rare indeed (but thought to be so much more prevalent than is currently known), we have come to this juncture. As a matter of fact we are currently seeing more and more new people coming to FB and Yahoo pages with a new diagnosis of PMG. And there are who knows how many more that have gone undiagnosed, particularly if they haven’t had seizures or some other significant event that leads to an MRI. PMG is hard to diagnose! And add to that the stories I hear of parents who are taking their kids into see their doctor’s and saying, “Something isn’t right. She isn’t rolling over (or talking, walking, etc.) and I am concerned.” Only to be told that “They will grow out of it. It’s just a phase.”
It absolutely INFURIATES me! And I know that I am not alone! And so we begin our journey to start this nonprofit organization dedicated completely to PMG awareness, support, education, and advocacy.
One thing is certain. We CANNOT do this alone! We need EACH of you to partner with us for the sake of our loved ones and for the sake of those yet born. We may not have a cure today, but hopefully we can stand UNITED for our cause and maybe, just maybe, we might make a difference for all those with PMG now and in the future.
Catrina Byrge, just happy being Brie’s Grandma 🙂