Baby Jori...
Jori Elyse Womble is the daughter of one of my close friends. I had the honor of taking her newborn photos, as well as a few other shoots. As I viewed at her through the lens of my camera, I knew there was special moments I was capturing of her, however I did not realize just how precious and treasured each photo, even the ones slightly out of focus, and even my test shots pre-shoot were.
You see, miss Jori was a little girl who faced a future of uncertainty, a big question mark as to the challenges that lay before her. She was born with a rare brain malformation called Bilateral Perisylvian Polymicrogyria. To explain what that is... the folds in her brain on both sides were small, compact and consisted of way more than those in the typical brain. Because of this Polymicrogyria (also known as PMG), Jori was prone to seizures, some of which were short, but there were many that were severe in which a trip to the hospital and usually a hospital stay became routine for Jori. She also developed an additional type of seizure called "myoclonic", which acted like a reset button on her brain and resulted in her needing to "relearn" any new skills she may have recently acquired.
Jori was diagnosed just after turning 4 months old after concerns about her vision and hearing became present, and after undergoing a wide array of tests. Almost 4 months later at almost 8 months of age, Jori passed away.
You see, miss Jori was a little girl who faced a future of uncertainty, a big question mark as to the challenges that lay before her. She was born with a rare brain malformation called Bilateral Perisylvian Polymicrogyria. To explain what that is... the folds in her brain on both sides were small, compact and consisted of way more than those in the typical brain. Because of this Polymicrogyria (also known as PMG), Jori was prone to seizures, some of which were short, but there were many that were severe in which a trip to the hospital and usually a hospital stay became routine for Jori. She also developed an additional type of seizure called "myoclonic", which acted like a reset button on her brain and resulted in her needing to "relearn" any new skills she may have recently acquired.
Jori was diagnosed just after turning 4 months old after concerns about her vision and hearing became present, and after undergoing a wide array of tests. Almost 4 months later at almost 8 months of age, Jori passed away.
I have asked quite a few medical professionals, including doctors and nurses if they knew what Polymicrogyria was, there was NOT ONE who knew... not one. PMG is considered a rare brain deformity, however there are many many babies that are born with it. In the past it may have been mistaken with Cerebral Palsy, especially since one of the manifestations of PMG is Cerebral Palsy.
Jori was a beautiful little angel on earth, just as she is certainly a beautiful little angel in heaven. She touched more people in her life that was measured in months rather than years, than some do a lifetime measured in years.
It has been very hard to watch my dear friend Toni and her husband, as well as their family go through this, and although I do not completely understand how they feel (and hope to God I never find out), my heart breaks right along with theirs, and I've cried right along with them.
Toni and I became friends after meeting at work years ago, about 12ish years. We both were walking out of the building at work at the same time and we happen to notice something... we had on the same shoes, were wearing the same coat, had the same purse strapped over our shoulders, and I believe we even had similar pants on. I joked, not really knowing Toni all that well yet and asked "okay what do your underwear look like?". We laughed, and we may have even determined that we were not in fact wearing the same ones.
Some years into our friendship I got engaged, and got married... and had my little boy (Billy) who is 4 1/2 now. And a year after I got married, Toni got married and had a little girl (Avery) who is going to be 4 in May. We also ended up living in the same town, even though our job was located about 30 miles away from where we live. Neither of us still work where we met.
As I got to know Toni more and more I realized that she is the type of friend who would do whatever she could to help her friends and family in any possible way, no matter what was going on in her life.
"Chicken Soup" Some months ago I had pneumonia... Toni called me and asked me if there was anything she could do, she asked if she could bring me soup... even though her husband Jason was in the hospital, and she had recently come home from the hospital with Jori.
If you would like to read more about Jori and her story, as well as find out more about Polymicrogyria, please visit Jori's page at http://www.jorisjourney.org
It has been very hard to watch my dear friend Toni and her husband, as well as their family go through this, and although I do not completely understand how they feel (and hope to God I never find out), my heart breaks right along with theirs, and I've cried right along with them.
Toni and I became friends after meeting at work years ago, about 12ish years. We both were walking out of the building at work at the same time and we happen to notice something... we had on the same shoes, were wearing the same coat, had the same purse strapped over our shoulders, and I believe we even had similar pants on. I joked, not really knowing Toni all that well yet and asked "okay what do your underwear look like?". We laughed, and we may have even determined that we were not in fact wearing the same ones.
Some years into our friendship I got engaged, and got married... and had my little boy (Billy) who is 4 1/2 now. And a year after I got married, Toni got married and had a little girl (Avery) who is going to be 4 in May. We also ended up living in the same town, even though our job was located about 30 miles away from where we live. Neither of us still work where we met.
As I got to know Toni more and more I realized that she is the type of friend who would do whatever she could to help her friends and family in any possible way, no matter what was going on in her life.
"Chicken Soup" Some months ago I had pneumonia... Toni called me and asked me if there was anything she could do, she asked if she could bring me soup... even though her husband Jason was in the hospital, and she had recently come home from the hospital with Jori.
If you would like to read more about Jori and her story, as well as find out more about Polymicrogyria, please visit Jori's page at http://www.jorisjourney.org
