Mazzy was born full term, but at three days old, she turned purple and was rushed to the hospital. It was then discovered that Mazzy was having seizures. She was transported to Children's Hospital of WI where they performed an MRI and that is when her mother found out she incurred extensive brain injury from a stroke. Mazzy remained in the NICU for over a month and during that time, it was also discovered that she has a rare genetic disorder called Incontinentia Pigmenti, which affects her skin and teeth, but most traumatically, her central nervous system. When it comes to her teeth, she is missing many and is losing perfectly healthy adult teeth due to shallow and minimal roots. Her family had hoped to use her adult teeth to anchor dentures, but will have to wait until she is finished growing to investigate dental implants.
The brain impairment caused by stroke and seizures caused Mazzy to have cognitive delays, as well as physical and emotional impairments. She spends more time than we'd like at Children's Hospital (although she loves it there), having seizure monitoring and tests. Last year, Mazzy had brain surgery to pinpoint seizures and hopefully remove the worst parts of her brain. Unfortunately, the surgery was unsuccessful and her neurologists confirmed that her brain is very difficult to understand because of the combination of genetic disorder and brain injury. Over the past few years, her epilepsy developed into ESES (Electrical Status Epilepticus in Sleep). Mazzy’s brain is constantly firing as she sleeps and is unable to perform the duties it should be, making it difficult for her to learn and causing severe fluctuations in mood.
This past summer Mazzy had surgery on her affected leg to straighten it and lengthen her achilles tendon. This has improved her mobility and she now has an easier time walking. She thrives each day, but her family knows that additional surgeries are on the horizon. Mazzy is a happy little girl, despite her limitations. She is an inspiration for her mom Christy and three brothers; Joe, Austin and Jack, whose lives she fills with light. Mazzy will most likely require her mother’s support throughout her entire life, but there is hope she will gain independence as she gets older.