If you’re reading this blog, you are probably already familiar with Polymicrogyria. You probably already know that there are conditions associated with PMG that can be life threatening. A lot of children have complications due to or in addition to their PMG diagnosis. Most of the time with proper care and medical intervention, conditions associated with PMG are treatable but not all of the time. PMG Awareness is dedicated to raising awareness and educating families, friends and the medical community about the conditions associated with PMG and the dangers that some of their conditions may bring.
Jason and Tori Womble had never heard of PMG. Their third daughter, Jori Elyse Womble, arrived June 9, 2011. Jori’s birth was uneventful. Doctors noted that her head was somewhat on the small side but it wasn’t something they were hugely concerned about at the time. After a few tests, their doctors told the Womble’s they would keep an eye on it.
Until she was about two months old, Jori was developing normally. She was enjoying her time at home with her parents and her two older sisters, Avery and Sam. Around three months of age, Jori began to change. She wasn’t reaching the milestones that she was supposed to be meeting anymore. The Womble’s began to notice she didn’t seem to be able to make eye contact anymore. She was favoring one side of her head. Jori was struggling with tummy time and was having a difficult time holding her head up. All of this began to worry the Womble’s.
At Jori’s four month well baby visit, the pediatrician noted that Jori’s head circumference had not increased since her two month appointment. An MRI was ordered as well as a few other tests. Jori’s parents met with a neurologist to discuss the MRI findings. It was at this point that Jori was diagnosed with Bilateral Perisylvian Polymicrogyria (BPP). The Womble’s, as seems to be common, weren’t told much about what to expect for Jori or about what this would mean for their family.
Shortly after receiving her BPP diagnosis, Jori began having seizures. Jori was diagnosed with having Partial Complex Seizures. She also developed myoclonic seizures and ended up on three different medication to try to control her seizures. Jori needed to be hospitalized several times which eventually caused Toni to quit her job to be a full time caregiver for Jori.
As they spent more time in the hospital with Jori, her parents realized that her body was struggling developmentally and physically. Jori’s neck strength was not making great improvements. Jori’s muscles were tense and she tended to keep her arms close to her body and her hands fisted. The doctors warned the Womble’s about a possible Cerebral Palsy diagnosis in the future. At this time, the Womble’s contacted their state’s early intervention services to begin getting additional help for Jori. They were able to secure physical therapy services to help Jori start to develop building neck strength and work on her muscle tone.
Jori was a fighter but many complications associated with her PMG diagnosis wore sweet Jori out. Jori Elyse Womble passed away at almost 8 months old on February 1st 2012. Doctors believe that complications brought on a seizure that resulted in SUDEP (Sudden Unexplained Death In Epilepsy). While the Womble’s continue to struggle with the loss of Jori, Toni hopes that Jori knows she will never be forgotten – no matter how many months, milestones or years that may go by.
When someone you love becomes a memory, the memory becomes a treasure.
For more information about Jori or to offer words of support and comfort to the Wombles, please visit http://www.wix.com/jorisjourney/jori. There is more information about SUDEP (Sudden Unexplained Death in Epilepsy) on the PMG Awareness website.