Help for the Victoria Family

Elise Victoria is six years old and loves purple, sparkles, unicorns and her cats. Before the morning of July 2nd, her biggest worry was how she would spend the long summer day playing in her yard. Now, she is bombarded with nurses, NG tubes, painful plasmapheresis treatments and “gross” pills to swallow while she stays inpatient at Boston Children’s Hospital during her summer vacation.

On the morning of July 2, 2018, Alanna ran down stairs to her daughter crying a strange cry that she never heard before. Elise couldn’t speak, was starring straight ahead and couldn’t lift her right arm. Fearing a stroke, Alanna called for an ambulance that took her to Winchester Hospital. Winchester decided to transfer her to Children’s Hospital in Boston due to the severity of Elise’s condition. When Elise was finally able to speak, she told her mom and doctors that her “body went crazy” that morning and that she couldn’t see out of her right eye. She was correct. Tests revealed that Elise suffered a seizure that left her right arm paralyzed temporarily and her right eye’s vision affected from optic neuritis.  The question was why this healthy six year old suffered a seizure out of the blue?  Many invasive tests later revealed that Elise has Myelin Oligodendrocyte Glycoprotein Autoimmune Disease, or “MOG”.

MOG is a relatively “new” disease that is still being researched.  What is known is that MOG antibodies attack nerve coverings and cause inflammation in the brain and cerebral spinal fluid, thus causing seizures. Elise has a central IV line placed so that she can have a treatment called plasmapheresis. Her blood plasma is removed and “cleaned” of the MOG antibodies that attack her own body. She also has an NG tube and several IV’s to receive medication, including harsh steroids that traumatize her fragile little body. 

The Victoria family needs our help. Elise is still inpatient at Children’s and Alanna has spent every moment by her daughter’s side. She is unable to work and Mike took off several days during Elise’s initial hospitalization, but he had to return to work to pay the bills. Alanna’s inability to work not only puts her employment in jeopardy, but also makes it extremely difficult to care for Emma, Evan and the everyday family bills.  The two ambulance trips alone were $4,800!   After her discharge, Elise will require weekly doctors’ appointments in Boston, physical therapy sessions, expensive medications (even the copays are outrageous) and specialized glasses.  

If you are able to contribute, the Victoria family would greatly appreciate it.